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Bisous for Léo

The world is a small and amazing place. More than that, the world is full of good people. One degree of seperation connected me to one of those exceptionally good people, Emily Rogath Steckler. Emily had a career in public relations when her best friend’s son, Leo, was diagnosed with a rare disease changing the course of so many lives.

Join us for a beautiful conversation about love, friendship, hope, and the incredible journey to find a cure to INAD for five-year-old Léo. Learn about the work that Emily and her best friend Deborah are doing to help millions with their amazing organization Bisous for Léo.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Bisous for Léo does?

Emily Rogath Steckler:  Bisous for Léo is an ancillary arm of the Inad Cure Foundation. This is the only United States-based foundation set up to try to treat and cure a rare disease called infantile neuroaxonal dystrophy or INAD. In layman’s terms, it’s a cross between Parkinson’s, Alzheimer’s, and Lewy body dementia. The children who have Inad share a gene mutation with some forms of Parkinson’s and have the same parthenogenesis as those adults who have Alzheimer’s. It’s an ultra-rare disease where there are probably between 150 to 200 children worldwide who are currently affected. But because of the genetic links, the hope is that by treating the children who were affected, we could in turn help treatment and cure options for those who have Alzheimer’s, Parkinson’s, and Lewy body dementia.

Charity Matters: What was the moment you knew you needed to act and start Bisous for Leo?

Emily Rogath Steckler:  Leo is the son of my best friend Deborah.  Deborah and I went to high school and college together.  We’ve just gone through life together.  Deborah ended up winning this unbelievable internship for an interior designer in Paris. That led to her finding love at this firm and marrying this unbelievable French man named Anton. And together they had Leo.

 Leo developed normally for about two years. After that, he started showing extreme signs of regression. All the skills he had learned from walking to talking, to feeding himself, and cruising, literally, everything began to deteriorate. So eventually, they turned to a geneticist, who was able to diagnose him with this ultra-rare disease called Inad. When he was diagnosed, we started doing the research to figure out what it actually meant, because admittedly no one had ever heard of this disease.

There are 50 million adults worldwide who are affected by Parkinson’s and Alzheimer’s, Lewy body dementia, and neurodegenerative diseases.  As soon as that genetic link was made, we realized we had to take action. Actually, in 2007, my grandmother had passed away of Lewy Body dementia. It was horrible watching her deteriorate.  To think that children would suffer the way that I saw her suffering,  it’s inconceivable. As soon as you understand that these children are genetically linked to 50 million adults who are actively suffering currently from these neurodegenerative diseases. Why isn’t everyone not rallying around the children? So we founded Bisous for Leo three years ago.

Charity Matters: how Did you get The Name for your organization?

Emily Rogath Steckler: We had a trip scheduled to visit Deborah the day after Leo was diagnosed. We went to their apartment and almost instinctively,  I think my daughter Chloe picked up that something was off.  So we walked into the apartment and she went right over and gave Leo a kiss. I snapped a picture.  I just sat there looking at them thinking, if only we could kiss this thing and make it better. At the moment that the photo was taken, I didn’t even know what the thing was, but I knew somehow kisses would need to be involved in helping the cause. Bisous is the French word for kisses.

Charity Matters: What are your biggest challenges?

Emily Rogath Steckler: Getting people to listen long enough to understand that by treating the rare disease, we can potentially help so many millions of people worldwide. I think people’s attention spans are pretty short these days. When you think back to when aids came onto the scene, there was an education factor. You never really think of a pro when talking about a deadly disease. But the pro in that instance is that so many people were affected by AIDS, that they had to pay attention. 

In this instance, there are only a couple hundred children who are affected. Once you are able to understand that the children are the purest form of this mutation. The adults who have early-onset have experienced more life, they have more environmental factors, they have sun exposure, they’ve consumed alcohol, they have caffeine, and you know, these children are pure. So getting people to understand that and me relaying it in as few words as possible, is really a clutch thing.

Charity Matters: What fuels you to keep doing this work?

Emily Rogath Steckler: We haven’t achieved our goals yet. So until there is a treatment or cure, I have no intention of stopping. These children are the missing puzzle piece of this larger neurodegenerative equation, and it is scientifically proven.

Charity Matters: When do you know you have made a difference?

Emily Rogath Steckler: There’s so many, and I consider every victory, big or small to be a victory. I mean, this podcast is an example, you’re using your platform to help me get the word out, which is really half of the challenge. It’s education, and it’s funding.

Charity Matters: Tell us about your success and your impact? 

Emily Rogath Steckler:  I’d say the biggest impact has been the awareness raised and generated through our Kisses for Leo campaign  Prior to the launch of it, there were very limited resources. We’ve had so many wonderful celebrities who have lent their voice and their kisses to the cause. Everyone from  Lady Gaga to Eva Longoria and Laura Dern. They’ve all taken a minute to post their kisses on social media, send their kisses in, and it every kiss posted furthers this awareness factor. They obviously have much larger platforms than we do. The fact that there is such grace that they would take a minute to lend their voice and say this cause is valid. And with this kiss, I support this work and educate you. I mean, that’s a huge impact.

Charity Matters: If you could dream any dream for your organization, what would that be?

Emily Rogath Steckler: Obviously to eradicate the disease entirely.  I would love for a larger organization to want to work with us to help further the science.  Again, there is such a proven link between Parkinson’s and Alzheimer’s and Lewy body dementia. If any of the larger foundations that are working on those causes said,”Yes, we agree that these children are important to the work that we are currently doing.”  It would be such an immense help because as you said, the funding is a huge issue.  Every dollar raised we put back towards medical advancements. If a larger organization or foundation said we understand why these children are so vital and we would love for them to be a part of our work. I mean, my heart would just explode. It would be so good.

Charity Matters: What life lessons have you learned from this experience?

Emily Rogath Steckler: .  I’ve learned so much but really not to take health for granted. I’d say that’s the biggest thing, I am guilty of probably having taken it for granted in the past. Now every day that I wake up and I’m healthy and my family is healthy and my children are healthy. It’s no longer just a small thing that I take in stride. I’m very grateful for that.

Charity Matters: How has this journey changed you?

Emily Rogath Steckler:  I have more perspective. I feel how short and tragic and beautiful life can be. This is obviously a horrific thing for any family to face but I have found such beauty in humanity. I’ve been so comforted that I have received calls from friends from high school who I haven’t spoken to in 20 years.  So I have had my faith in humanity restored.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Episode 28: Pancreatic Cancer Action Network (PanCAN)

We all know that October is Breast Cancer Awareness month but did you know November begins Pancreatic Awareness month? Believe it or not, November is just days away. A few weeks ago I was having lunch with a new board member of the nonprofit I work for. We were having a fantastic conversation about the nonprofit she works for called Pancreatic Cancer Action Network or PanCAN. She asked me, “Why haven’t you interviewed PanCAN for Charity Matters?” My reply was, “I would love to!” Like that she had me introduced to PanCAN’s first employee, President, and CEO, Julie Fleshman.

I have to admit I was a little intimidated because under Julie’s leadership PanCAN grew from one employee to 150. PanCAN has funded over $149 million dollars in research for Pancreatic Cancer and created a platform that has fueled incredible change for the Pancreatic Cancer community. Despite my fears, Julie was beyond amazing, passionate and so much fun to talk to. Join me today to meet this inspirational leader and learn about her incredible journey in changing lives.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Pancreatic Cancer Action Network does?

Julie Fleshman: PanCAN is a national patient advocacy organization focused on pancreatic cancer. Our vision is to create a world in which all pancreatic cancer patients will thrive. So every day, that is what we are focus on. We fund research and clinical initiatives, we provide patient services and we do government advocacy work in Washington, DC to increase the federal resources. And we have an amazing network of volunteers all across the country that are helping us to raise awareness, visibility, and funds for the disease.

Charity Matters: Tell us how you got involved and went from employee number one to CEO?

Julie Fleshman:  I got involved 22 years ago now, it is hard to believe. In 1999, my dad was diagnosed with pancreatic cancer when he was only 52 years old. He hadn’t been feeling well, but they couldn’t really figure out what was wrong with him. At one point, he was told to go home and take some time because they thought he was just having indigestion. Unfortunately, it ended up being a diagnosis of pancreatic cancer. He only lived for four months after his diagnosis and we were devastated.

I had never heard of pancreatic cancer, we really didn’t have cancer in our family. And I could not believe that there was absolutely nothing that could be done that there were no treatments. We were basically told, go home and get your affairs in order. So after he died, I was mad, and I started to do some research back in those early days of the Internet.  PanCAN had just been founded in 1999 by three people who had also all lost their parents the disease. One thing led to another, sort of serendipity,  I ended up being hired as the very first employee in 2000.

Charity Matters: What Have been your biggest challenges?

Julie Fleshman:  I think there are two sets of challenges. One is the challenge of this disease. It is a challenging disease scientifically. Certainly when PanCAN was founded, literally, there was very little known about even why it was challenging. So the baseline was really nothing. There was so little research happening anywhere in the country focusing on pancreatic cancer. So there was that challenge of how do we even attack this? What is the strategy? And what do we do?

Then there’s the challenge of the organization and the operations and raising money and what our programs going to be. And hiring staff and all of those things.  I think we did a really good job in the early days of creating excellent programs, that we’re serving the pancreatic cancer community.  Our patient’s services were literally providing services to patients and families.  Also on the research side, really looking at the big picture and saying, “Okay, at this time, we’re small but where can we have the greatest impact with the least amount of dollars?”  I think we did a good job being smart in those early days about what those things were. You know, we just feel very lucky that it is an amazing community, from the research community to the constituents, volunteers, and donors, who have helped us to continue to grow year over year.

Julie with Patrick Swayze’s widow, Lisa Swayze

Charity Matters: What fuels you to keep doing this work?

Julie Fleshman: I think although, the progress is never as fast as we want it to be. But you know, you meet people and you share their stories and you talk to a patient and maybe that they’re not going to beat it, but they want to be a part of helping to make sure that it’s better for future people. That just gives you that inspiration to say, we got to keep doing this for them. If they’re not here to get to be that voice, we have to be that that voice for them. And there are successes, right? It’s not maybe the big win that we all want that there’s a cure, but there are steps every day towards that. So you really have to celebrate sort of those small wins.

Charity Matters: Tell us what success you have had and your impact? 

Julie Fleshman:  Ultimately, we’re trying to change patient outcomes. So for cancer and looking at pancreatic cancer, we sort of use the five-year survival rate.  That’s the kind of Capstone it doesn’t move very quickly, but it has moved from 3% when I started doing this, to 10% today. That is still unacceptable but is absolutely moving in the right direction.

Then you have to look at sort of all the things day to day. Like the research grants that we’re funding and when and those researchers go on to publish that work and that publish work changes practice. Then the next researcher who’s now going to take those that outcome and they’re going to add to it to get to the next step.

 Just last year alone, we had 45,000 interactions with patients and families through email and phone calls and people attending our webinars using all of our different patient services. I know from the feedback that we get, how meaningful that is to people. Especially those families that connect with one of our case managers and utilize them throughout their journey that when that family member dies, usually our case managers get the most beautiful email or card from the family saying, thank you for being there with us through this whole journey and so even though the outcome isn’t what we want it to be yet they add to the making it a more positive experience.

 I can see there is a pancreatic cancer research community today that didn’t exist. There was not a research community focused on pancreatic cancer 20 years ago. There are more resources being put towards the disease across the board and all of that is helping to drive and accelerate progress. I feel like every year now there’s sort of this major scientific breakthrough. That before it felt like it was a really long time between when it felt like we were making progress.  You can definitely see the momentum is picking up and, and the rate of progress is much faster.

Charity Matters: How has this journey changed you?

Julie Fleshman:  It is hard for me sometimes to believe it was 22 years ago that my dad died. I mean, really, it feels like a lifetime ago in some ways. And in other ways, I can still remember sitting on the couch next to them and having a heart-to-heart. Those are things when you lose a parent, or someone close to you, that are life-changing, and really do change the way you view the world.

I always think God, I’d love, of course, my dad to be back. But I also cannot imagine my life without PanCAN. This has become such an important part of who I am and what I do, and just everything, it’s so important to me. So I feel like, in this strange way, he gave me this amazing gift. Right? And it’s not just doing the work, but I  feel passionate and committed to being a part of changing outcomes.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Breast Cancer Research Foundation

This October, I wanted to begin with a throwback conversation to honor those who began what we now recognize as Breast Cancer Awareness Month. In my world, the more people you have helped the bigger the celebrity you are. Three years ago I had the privilege to talk to Myra Biblowit, the President and CEO of the Breast Cancer Research Foundation (BCRF). I was everything you would be when meeting your hero…nervous, anxious, excited, and truly thrilled to share her remarkable journey changing the lives of millions of women around the globe.

Our conversation was timely because just two days before we spoke, a friend of mine had a mastectomy. Myra was beyond lovely, compassionate, soulful, and truly inspirational in her commitment to prevent and cure breast cancer. Although October is Breast Cancer Awareness month, this disease doesn’t care what day or month it is. Every 2 minutes a woman is diagnosed with breast cancer. Myra, her team, and a remarkable group of people are all changing the game with their work. After our conversation, I kew that cancer doesn’t stand a chance with this beautiful lady starring it down.

Charity Matters: Tell us a little about what BCRF does?

Myra Biblowit: We wanted to put an end to breast cancer. Our goal was and is to have no more fear, no more hospital visits, no more side effects, no more needless suffering, and no more loved ones lost to breast cancer. The only way to achieve our goal to prevent and cure breast cancer is through research. 

Charity Matters: What was the moment that The Breast Cancer Research Foundation began?

Myra Biblowit: BCRF started in 1993 but I met Evelyn Lauder in 1985 and we forged an incredible friendship. Evelyn called me and said that she had an idea to create a foundation that focused on breast cancer research. She was concerned after seeing the pace at which breast cancer research was moving. She had looked around the country and there was not one organization that was doing research with a laser-sharp focus.  Evelyn said, “I can do this and if I can do it and I don’t it, it would be a sin. Will you help me?” She had a soul and a heart that was enormous.  Working on the pink ribbon symbol she knew she could make this a ubiquitous symbol of the cause to get this issue out of the closet.

The story doesn’t end with creating awareness, it extends to harnessing dollars towards research to change the future. I told Evelyn, I would help her find an Executive Director and get BCRF off the ground. At the time, I was working at the Museum of Natural History. In 1993, BCRF began at Evelyn Lauder’s kitchen table with our dear friend Dr. Larry Norton of Memorial Sloan Kettering Cancer Center.  Seven years later, I had had a few job opportunities arise and I reached out to Evelyn and Leonard Lauder for their advice as friends. Evelyn said, “Well this is a slam dunk.  This is bashert!  Yiddish for meant to be….last night the Executive Director told us she wanted to stop working.”

By Monday, I was the President of BCRF. Evelyn gave up the Presidency and became Chairman and Founder and I went to work for my darling friend. I started April 1st, 2001, and I told her I would take the organization internationally, raise a lot more money and create a strategic thoughtful grant program. 

Charity Matters: What fuels you to keep doing this work?

Myra Biblowit: We lost Evelyn in 2011, and I do what I do in her memory and in her honor. BCRF is her legacy and I work hard to make sure that we are the gold standard. Our work stands as a tribute to her vision. Today we are the largest global funder of breast cancer research. We are the most highly rated breast cancer organization in the country. Evelyn had such vision and clairvoyance. Breast cancer was in the closet when we started. Thanks to pioneers, like Evelyn, breast cancer, and women across the globe, it is out there now.

The dollars that we are investing at BCRF are not only answering questions about breast cancer today but a multiplicity of other cancers as well. Evelyn would not have envisioned the relevance that BCRF would have.

Myra Biblowit and Dr. Larry Norton, photo credit Suzanne DeChillo

Charity Matters: When do you know you have made a difference?

Myra Biblowit: Since BCRF was founded there has been a 40% decline in breast cancer deaths worldwide. The proof is in the pudding. Truly we can tell you that BCRF has had a role in every major break thru breast cancer prevention, diagnosis, treatment, and survivorship as well as an advancing knowledge about other metastatic diseases. 

When Evelyn and I were working together we were mainly talking about diagnosis and treatment. We knew then and know even more now that research is THE reason.  Today that continuum begins with prevention and extends with survivorship. The connector is that research is THE reason, it is the glue.

Charity Matters: Tell us what success you have had at BCRF?

Myra Biblowit: I think it is important for people to know that breast cancer is rapidly transitioning to a manageable chronic disease. People need to not be fearful of the stories of the past from their mothers and grandmothers. Treatments are much more targeted. When a woman is diagnosed today they can try to find what type of tumor she has and then find the right treatment for that tumor type, which is huge.

We now know that breast cancer is not one disease but made up of four or five different diseases in terms of tumor types.  Each one has more in common with other forms of cancer than with each other. Today’s treatment has a far greater likelihood of success and they are far less toxic.

One study that BCRF was involved with was the TAILORx, a major multi-year and multi-country study to determine what women needed chemo who had early-stage estrogen-positive breast cancer. We knew women who had a high score needed chemo and women who had a low score did not need it. We didn’t know for the 70,000-100,000 women in the middle range if they needed chemo or not. Today we now know that those women do NOT need chemotherapy.  This study proved the power of research. These are the advances that change the future for our mothers, our daughters, and our friends.

Charity Matters: What is your vision for the Breast Cancer Research Foundation going forward?

Myra Biblowit: In the current year we raised $80 million dollars and we awarded grants of $63 million dollars to over 300 researchers across 14 countries. We could have funded more had we had more funds and we are the engine that tells researchers to take that chance. 

When Evelyn died, we devoted a fund to metastatic disease by creating a Founder’s Fund. We want to use that fund to find more about metastatic disease.  The more dollars we can give to our researchers the more breakthroughs we can make.

Charity Matters: What life lessons have you learned from this experience? How has this journey changed you?

Myra Biblowit: You know Evelyn gave me an opportunity to do something professionally that touches people’s lives profoundly. How lucky am I? Evelyn was grateful for everything that came her way. She was a child of the Holocaust and her family fled when she was an infant. Everything that she and Leonard achieved was a partnership. She was magnetic and wonderful and when we lost her, Leonard stepped in. I am filled with gratitude every day and for the opportunity to learn from the extraordinary Lauder family. What fed their soul was to make the world a better place and it was infectious. 

 

Charity Matters

 

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Episode 26: Love Not Lost

I love meeting new people and while Zoom isn’t always the best way to meet, somedays it just has to suffice. The reality is that an amazing conversation can happen anywhere, whether in person or online. Today’s conversation is just that, amazing. When you meet someone you haven’t met before, you honestly never know what is going to happen? This one had me in tears, in the best of ways and I hope it does the same for you.

Join us today for an incredible conversation with Ashley Jones, the founder of Love Not Lost. Ashley shares her journey through grief with the loss of her young daughter and her transformational experience from loss to creating a remarkable organization that provides family photoshoots for the terminally ill.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Love Not Lost does?

Ashley Jones: Love Not Lost is on a mission to revolutionize the way we heal in grief. We photograph people facing
a terminal diagnosis, provide community support tools and resources to help people support others,
and we train leaders in the workplace to create cultures of caring around grief and loss at work. 

Charity Matters: Tell us about your earliest memories or experiences with philanthropy?

Ashley Jones: I have always had a heart to help people. As soon as I was old enough (around middle school), I volunteered in the kid’s ministry at my church and stayed involved for decades. Through a peer-mentorship program at my high school, I volunteered to help severely handicapped children at the local elementary school. After graduating, I went on an ArtsLink trip to support orphanages in Ukraine and also served neighborhoods in Northern Ireland through Youth for Christ.

When Compassion International came to my university, I signed up to support a kid in India. After my daughter died, I volunteered with Help-Portrait, which helped lay the foundation for creating my own nonprofit. I had zero experience starting a nonprofit and leading a charity, but I knew I would figure it out. 

Charity Matters: What was the moment you knew you needed to act and start Love Not Lost?

Ashley Jones: As I photographed Kevin Hill on his very last day on earth, fighting Stage 4 Melanoma Cancer, I knew this was part of my purpose; helping other people through suffering and loss. When his wife, Rachel, shared the impact the photos had on her kids in their healing, I knew this work was important. I kept volunteering portrait sessions for families facing a terminal diagnosis and launched it into a nonprofit the day my husband came to me and said, “I love you and your giving heart, but we simply can not afford to keep giving everything away.” I knew I could find other people who wanted to help me give it all away to these families. 

Charity Matters: What are your biggest challenges?

Ashley Jones: One of our biggest challenges is pioneering in a world that is taboo. People are reluctant to talk about dying and grief, let alone engage with it on a deeper level. Our first hurdle is getting people to connect with our mission. Another hurdle is finding people who are willing to give to support people in grief. It’s hard to understand the depth of impact if you haven’t been through it.

Covid was obviously a huge challenge. We lost close to half of our expected annual donations due to canceled events and people not giving (which I completely understand), and we’re still recovering from that. We’re hoping our virtual wine tasting event will be a big help this year! 

Charity Matters: What fuels you to keep doing this work?

Ashley Jones: The thing that keeps fueling me to do this work is the impact. When I hear someone tell me that the photos we gave them helped them heal, or a support tool gave them the courage to reach out to someone to show them love, or I’m talking to someone and can see the “ah-ha” moment when something clicks and they have a moment of healing right there on the spot. It’s a beautiful thing, and that’s how this world is going to change for the better. Each one of us healing our wounds, one moment, one person at a time. 

Charity Matters: Tell us what success you have had? 

Ashley Jones: We’ve photographed close to 100 families now, impacting thousands of people through their friends and family grieving. We’ve given over 5,000 support cards out, not to mention the visitors and users on the digital version, HowCanILoveYouBetter.com… We’ve given thousands of empathy cards out to people to send to spread love and care through loss. And we’ve done it all on a shoe-string budget, but we’re facing max capacity and we really need to raise more to grow and serve more people. 

Charity Matters: If you could dream any dream for your organization, what would that be?

Ashley Jones: As I dream for Love Not Lost, I imagine a world where everyone feels loved and supported in grief. A world where people know what to say and do, and collectively we help each other heal. I see Love Not Lost having photographers in every major city across the globe. I see us being the number one place people turn to when facing a terminal diagnosis or loss of any kind. We will continue creating tools and resources to help meet unmet needs and build bridges to connect people with empathy and love. 

Charity Matters: What life lessons have you learned from this experience?

Ashley Jones: I have learned some incredible life lessons on this journey so far, and I am sure there are many more coming my way. The first is that love heals. We all have wounds and we all experience loss. First, we need to love and care for ourselves; do our own work to heal before we can help others who are hurting. I believe hurt people hurt people, but healed people heal people. Changing the world truly does start with each of us doing our own work. 

Charity Matters: How has this journey changed you?

Ashley Jones: This journey has broken my heart a million times over. But each time, I get to rebuild my heart. And each time, I find that it gets bigger and bigger. I have grown so much in empathy, understanding, giving people the benefit of the doubt, and seeing people’s pain first. I’m much slower to anger and much more open to possibility. 

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Episode 25: The BumbleBee Foundation

Life is serendipitous, As most of you know, I no longer believe in coincidences. A few months back we asked all of our InstagraBumblm followers to send us their favorite nonprofits. One of the many on the list was an organization called The BumbleBee Foundation. I put it on a list and when we got back from vacation, I decided to reach out to Heather Donatini to set up an interview.  We had an incredible conversation about their family’s recent move and the loss of their young son, Jarren. One I think we were destined to have.

Join us today to listen to the heartwarming conversation with Heather Donatini, aka Queen Bee of the BumbleBee Foundation. Heather and her husband Jason, established the Bumblebee Foundation in 2011 in memory of their son Jarren who was diagnosed with rare liver cancer at the age of three. Their mission is to inspire hope, faith, and the overall well-being of pediatric cancer families.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what The Bumble Bee Foundation does?

Heather Donatini: Bumblebee exists to support other pediatric cancer families fighting the same battle that our family fought. And we do that through six programs with our largest being our patient aid program. The patient aid program provides financial support for families and can literally be anything that is going to lighten the load for a family. Sometimes it’s just utility payments or a gift card for a cup of coffee.  A cup of caffeine is a mighty thing in the hands of a very tired parent. We do anything from that on up to help with rent and mortgage assistance. In between, we do whatever it is that’s going to make the journey a little bit easier for our families. That is what we strive to do.

Charity Matters: What was the moment you knew you needed to act and start your organization?

Heather Donatini:  We watched her son fight for 18 months for his life. These children are my heroes because they’re always smiling and they have the best attitude ever. When our son Jarren took his final breath, honestly, is when my husband Jason and I knew the exact moment that we needed to do something. We knew that Jarren’s life was not in vain and that we were honored to have been chosen to be his parents. Even if he was only going to be here for four and a half years.

There were other families lying in the hospital beds of the place that we had just left that we’re still fighting. We wanted to do this not just for them but for the ones that were to come. The ones that were diagnosed that we didn’t know about yet. We had tremendous support from our community and we saw other kiddos that did not have that same support. And we wanted to build Bumblebee to be a gap to fill that support for these families that were fighting and just like us.

Charity Matters: What are your biggest challenges?

Heather Donatini: When we started  Bumblebee,  I didn’t have experience in a nonprofit. Most of us don’t choose this but somehow know that this is what we were supposed to do. As you said, we kept getting these signs along the way. Somebody had once told me that skills can be built, but passion cannot. Those of us that are in the nonprofit field, truly understand that.  I can take classes, to figure things out to learn things that I need to know. We lead with passion and 100% once I kind of got out of my own way and realized it was going to be okay. 

Charity Matters: Tell us what success you have had? What has your impact been? 

Heather Donatini: You know, we don’t always have measurable outcomes. So even though The Bumblebee Foundation has over 350 active families that we’re serving throughout the state of California, a lot of times, our impact is simply in the voice on the other end of a line of a mama who you just told that you paid their mortgage for them. Or, Bumblebee just saved them from eviction, or just put brand new tires on their vehicle so that they can get their child back and forth to treatment.

Those are things that hit when a family is diagnosed, that you don’t think about even just something as simple as a meal voucher or a parking voucher, right?  A family could be making ends meat and doing just fine. Then all of a sudden, your child is diagnosed with cancer, and you have all these unexpected expenses, like paying for parking at a hospital. One of my most favorite memories is we were able to purchase a used vehicle for a family who was taking public transportation for treatment. Those are the kinds of impacts that Bumblebee strives to make.

Charity Matters: If you could dream any dream for your organization, what would that be?

Heather Donatini: Our ultimate goal is one day to have beehives all across the country. We call our supporters,  our beehive because they are part of this organization. As a whole, they create that for our Bumblebee kiddos. Our main headquarters is based in Westlake Village, California.  I would love to have that continue being our main beehive with beehives all throughout the states eventually.

Charity Matters: What life lessons have you learned from this experience?

Heather Donatini:  So many life lessons, I can sum it up in one word and that one word is trust. Trust the process, trust the journey. Trust has been the one thing that resonates the most with me since the day that Jarren was diagnosed.

Charity Matters: How has this journey changed you?

Heather Donatini: My heart, my eyes, my everything has changed. Going through something like that you cannot come away unscathed or unchanged. You learn to love more, you learn to accept more and you learn to see the beauty in a situation that people may not see beauty in. These cancer families are my everything. Making these connections with them and making things easier for them is such an honor. For me, as Jarren’s Mom, I get to honor the memory of my son.  I get to do that because of the support from our beehive that allows me that gift to serve.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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Episode 24: Be Perfect Foundation

I have been privileged to meet hundreds of truly remarkable humans over the years. All of them are amazing but there are always a few that are so dynamic, charismatic, passionate, and wise that you can never forget them. One of those people is the remarkable Hal Hargrave. You may remember his story from a few years back. Hal was involved in a tragic accident that left him paralyzed fourteen years ago. He used that experience to serve others suffering paralysis with his nonprofit the Be Perfect Foundation.

Join me today for a conversation that is better than caffeine. If you have read Hal’s story and not heard his passion, you need to take a listen. Trust me, this will be a gift you give yourself today. The man is pure light and inspiration.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what the Be Perfect Foundation does?

Hal Hargrave: Be Perfect Foundation– provides direct financial and emotional aid to individuals with paralysis. The foundation approves scholarships for everyday medical necessities such as; medical supplies, wheelchairs, home, and car adaptations, medical equipment, and exercise-based therapy.

Charity Matters: What was the moment you knew you needed to act and start  Be Perfect Foundation?

Hal Hargrave:  Shortly after I got injured, I remember lying in my hospital bed and coming to the realization that with every individual that walked through my hospital room, that each individual that left my room and left the hospital took away a mindset, approach, mentality, and went about the rest of their day emotionally in a state that was directly predicated towards my mood state, mental state, and how well I was emotionally coping with my injury and circumstance.

 I came to a quick realization that I could give each and every individual a positive takeaway that could set the tone of their day for the rest of their life. Finally, I came to the consensus that each and every decision that I made about how I was going to treat, talk to, and share moments with individuals was going to directly affect them either negatively or positively.  I was not willing to be a part of the simple idea that I could negatively influence somebody’s life any longer.

Charity Matters: What fuels you to keep doing this work?

Hal Hargrave: I believe that this is meaningful and purposeful work. I’ve stopped asking “why me” and I’ve started asking “why not me?” Once I came to the realization that this happened “for me” and started looking through the lens that I “get to”  do what I’m doing in my life. I started realizing that maybe this really is a blessing. That the life that I’m living is far bigger than just me and is for me.

Charity Matters: When do you know you have made a difference?

Hal Hargrave: I know I have made a difference in this world when others see differences in their world being realized. When other’s dreams come true, their goals are achieved, and happiness is obtained. 

Charity Matters: Tell us what success you have had?

Hal Hargrave: The success that we’ve had over the past 14 years of a philanthropic mindset as a family and as a community has been nothing short of amazing. We have raised over $7 million for individuals suffering from paralysis. This does not include the resource of hope that we have built through being a physical, literal, and emotional resource to those who are in need.

Charity Matters: What has your impact been? 

Hal Hargrave: Our impact has changed lives. Over the past 14 years $7 million and well north of 500 people and families. It has changed lives in the way that people live independently. How people live without despair any longer because they see hope and much more. The financial support that we provide to individuals to seek out therapeutic options has allowed them to achieve a healthier form of themselves. Having their health has contributed towards staying out of the hospital as well as finding a network of people that they can relate to. We provide a place where they will not give up, and emotionally being in a place where they see that their contributions to society and to others are life-changing.

Charity Matters: If you could dream any dream for your organization, what would that be?

Hal Hargrave: My dream is for us to get to a place where we have an endowment. An endowment would ensure that we would be around for life. Ideally, if this endowment was established, we would be able to continue to provide scholarships. This foundation should be around forever.

Charity Matters: What life lessons have you learned from this experience?

Hal Hargrave: One of the major life lessons that I’ve learned from this experience is the things that we think limit us just might be the platform that we need to propel ourselves forward to actually helping create change.  We always think that we have it as worse.  However, maybe life gave us an opportunity, not a setback.

When we start looking at life through a lens that maybe something was preventing us from something even worse happening, we start to live with the appreciation that we have a second chance. Sometimes these circumstances that put us into a deep, dark, and physically disabling place, actually are the opportunities that give us the tools that we need to create change in others’ lives. You don’t need to create change through physical activity. You can create change through intentionality, sincerity, words, and advocacy.

Charity Matters: How has this journey changed you?

Hal Hargrave: This journey has changed everything for me. I will be honest with you, 14 years ago I did not think that my life would amount to anything. I was under the impression that my physical setbacks in life would propel me into a place of a life that was meaningless, hopeless, and unfulfilled. What has happened over the past 14 years, which has not been easy, and has not been because of the lack of tenacity, trying, and getting up with purpose, has been nothing short of a dream could true.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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Episode 22: Until There’s a Cure

Until this past year and a half, many of us think about disease and illness as things that affect other people and not us. COVID changed all of that for everyone. We all realized how closely we are connected and our opinions of health are forever altered. Before COVID, there was something called AIDS that many of us have forgotten about.  One person who hasn’t forgotten is our guest today, Nora Hanna, the Executive Director of Until There’s A Cure.

Join us as we discuss how the landscape has changed for AIDS and the beauty of what happens when people come together to make a difference. So often we think with nonprofits we are taking on impossible causes. This conversation was so enlightening because it really shows us that time and commitment result in positive changes. Until There’s A Cure is a wonderful example of one organization’s mission to continue to educate the world on HIV AIDS.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about Until There’s a Cure?

Nora Hanna:  Until There’s A Cure was started in 1993 by two moms in Northern California who were really worried about what the world was going to look like for their children. They were devastated by the loss of friends to HIV and AIDS. So they came up with the idea to sell a bracelet to raise funds and awareness. It was a simple idea that has had a huge impact. We were the first nonprofit of any kind to celebrate it.

We started working with small artisan groups around the world, mostly in Africa. The goal was to find women who are true artists and giving them a vehicle to sell their merchandise. What it’s enabled them to do is really take what they’ve been doing for generations. We buy it from them, help them market it and then we sell it. Then with the funds that they have raised, they have started school for their daughters, they have been able to feed their children, they have been able to buy their own medication. So it’s really embracing, educating, and empowering villages of women. And when you change the life of one woman, you change the life of an entire village.

Charity Matters: What is the Back sTory of Until There’s a Cure?

Nora Hanna: In 1993, when they actually named the foundation Until There’s a Cure,  there was a lot of backlash. People didn’t want to talk about a cure, they wanted to talk about therapeutics to keep people alive. The foundation has always worried about today, direct care services, education prevention, and then the future vaccine research and development. So it is, and always has been today, tomorrow, and 10 years from now. So it is quite fascinating to look at what has come down the pike.

Charity Matters: What are your biggest challenges?

Nora Hanna:  Trying to raise funds during another pandemic has been a huge challenge. And complacency. People really do believe that AIDS, HIV has been cured. Because we don’t talk about it as a society, it’s not at the forefront. HIV doesn’t directly impact people like cancer,  autism, and all the other well-funded organizations out there.  We just need to keep talking about that HIV is still here. Yes, you can live a very long productive life. But just like any chronic illness, you don’t want to have to take medication for the rest of your life.

Charity Matters: What fuels you to keep doing this work?

Nora Hanna:  I grew up in the fashion industry and had my own jewelry company. In the 80s, in the 90s, our industry was hit so hard. I lived in New York then and I took care of two of my best friends until they passed on.  I carry that with me every day.  I’ve known so many people whose lives were cut short, in their 30s and it just makes me want to work twice as hard.

Charity Matters: When do you know you have made a difference?

Nora Hanna: Last year, at the beginning of the pandemic, three of our organizations had gotten very large orders for their merchandise. We were really hurrying to get everything from Zambia and South Africa to us.  I was very worried and I didn’t know what to do next. Eventually, I received a couple of messages from our partners in South Africa thanking me for the money. The funds saved their entire village for five weeks and allowed their children to eat. That is when you have to say, I need to work twice as hard.

Charity Matters: Tell us what success you have had? What has your impact been?

Nora Hanna: We have been able to provide seed money for the International AIDS vaccine initiative and we have helped fund, UCSF aids Institute. We work with Food for Thought up in Sonoma, California,  feeding people living with HIV and AIDS for 30 years. Since 1993 we have worked closely with the San Francisco Giants, which allows us to present our foundation to a packed stadium. So there are certain big chunks that you can look at and say we did that.

Through our internship program, we’ve worked with over 100 high school and college children. When our interns come in, I always say HIV is my passion. You need to find your passion. Whatever level you can give back, whether it’s volunteering once a year, or going to work for an organization, find it.

Charity Matters: If you could dream any dream for your organization, what would that be?

Nora Hanna:  The dream is that we would find a vaccine that can be given away around the world for free.

Charity Matters: What life lessons have you learned from this experience?

Nora Hanna: I’ve always wanted to give back on a bigger scale than I’ve done in my past.  This work has really given me the opportunity to feel part of something so much bigger than myself. Really just to be grateful, every day that I’m allowed to do this work.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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Season Two Episode 20: Once Upon a Room

In full disclosure, there is nothing more fun than talking to your friends about their nonprofit work. Especially when their work involves creating magic for very sick kids with extreme hospital room makeovers.  Think of your favorite HGTV show with the recipient being a sick child and the makeover being a hospital room. Many of you may remember the incredible story of the nonprofit Once Upon a Room that I shared a few years back?

Ford and Heidi Johnson, Jennifer Hull, daughter Josie and Sienna Dancsecs

Join us today for a fantastic conversation with the three Once Upon Room founders; Jenny Hull, her daughter Josie Hull and Josie’s best friend Sienna Dancsecs. Where we will learn about Jenny Hull’s incredible journey from being a celebrity assistant to an adoptive mother and nonprofit founder. These three remarkable humans will inspire you with their friendship, love, and beautiful work helping thousands of children and families each year.

Here are a few highlights from our conversation:

Charity Matters: Can you share Your journey with Josie prior to beginning Once Upon a Room?

Jenny Hull:  I was with an amazing family in Malibu that I worked for and they were very involved in an organization called Healing the Children. Subsequently, I became involved with them too.  What we did there was bring kids here to the United States for surgeries, and then we’d send them back home after they were healed.  Long story short, we got this request for these two adorable high conjoined twin little girls.

It was kind of our mission to bring these babies( Josie and Teresa) here to America and they were conjoined at the head. They were separated at UCLA Medical Center and had a 23-hour surgery. Our girls were the first successful girls to be separated successfully.  Long story short, I am now the very, very proud adoptive mother of Josie, one of the twins. Josie’s other twin is with another amazing family in Valencia and we’re really close together.  The birth parents are really the heroes in the story, selflessly allowing their children to be in America because that’s the only way they would have survived. They really are the unsung heroes in this, we are so grateful to them.  

Charity Matters: What was the moment you knew you needed to act and start  Once Upon a Room?

Jenny Hull: We spent we have spent over the years, I can’t even count the number of days and surgeries there have been too many!  We did we personalized Josie’s room every single time. Everybody would walk in with and they would look at it and say, “Oh my gosh Josie you love pink!” Then they would recognize her as a person instead of her what she was in there for and it really touched our hearts.

We realized it was especially important in a teaching hospital when you have so many new residents, for them to recognize the person is so important. So at 11 years old, we were laying in bed one night and I vividly remember this and Josie leaned over and says,  “Mom, I really really need to be doing something for someone else. I want to help other kids in the hospital.” I said, “That’s a great idea!” We called Sienna who was the same age, 11 years old, and told her the idea. Sienna said, “Let’s go in and decorate these hospital rooms.” Then Sienna came up with the name.

Charity Matters: What are your biggest challenges?

Jenny Hull: Definitely fundraising is a big challenge. In all honesty, we thought when we started we’ll do 50 rooms a year at CHLA. Period. We thought this is great and it’s something that will inspire the girls and they can inspire other people. We didn’t think much of it and we ended up doing 102 or 105 rooms our first year. Our town is so supportive, and they really rallied behind what we were doing and really supported the effort and we were so grateful for that.

Then we started expanding, all of a sudden, it was like the universe opened.  It’s really kind of because the girls took this on. People see the greatness and what it does for the hospital’s families and especially patients.

Charity Matters: What fuels you to keep doing this work?

Jenny Hull: What really keeps me going is these two amazing faces next to me. Literally, there are times that I don’t think I can do this anymore. I’m exhausted and fundraising is so hard. We just want to change the lives of these families and these patients so much. Every room is our heart and soul goes into.

Before COVID, we were at anywhere between 40 and 70 rooms a week. There’ll be nights I’m like, we’re done and then I look at Josie and Sienna.  It’s their dream, journey, and vision.  I feel like I cannot let down for a second if we just need to keep going.

Charity Matters: Tell us what success you have had and the impact of Once Upon a Room?

Sienna Dancsecs:  In terms of impact, we started in one hospital at CHLA in Southern California. Since we began we’re now in 12 hospitals across the country. We have had three new people and new states and new hospitals reach out in the past five days, about opening.  It continues to grow, we’ve done over 4000 rooms.

  I also think one of the things when it comes to impact is the impact we have on the kids and their families with their hospitals days and medical journeys. More than that we have such an impact on the volunteers, the hospital staff, and our donors.  I have had friends that have come to the hospital to volunteer, in high school and college, not knowing what they want to do when they grow up and leave saying, “Oh, I know, I want to be a nurse or I want to be a child by specialists.” One volunteer is now working in the foster care system because she met people through her work with us at the hospital. So I think it’s everybody around that really is affected by it, not just the patient or family. It’s everybody involved.

Charity Matters: How has this journey changed you?

Jenny Hull:  I’ve definitely learned so much about human compassion. To walk into rooms and the life lessons that we’ve just learned from our patients.  Watching their journeys being able to sympathize and empathize with what they’re going through and just to look at the world with such love, and try to figure it out.  There are people you walk by every single day that you just know are fighting some battle. It’s how to appreciate the people you are asked to be with on a daily basis. The greatest gift I’ve been blessed with of all the people we’ve been surrounded with, Josie and Sienna. Literally, truly the best gift we could have ever asked for. So, gosh, I’ve learned so much and I’m so incredibly grateful that we’ve been led down this road. You know, we didn’t we didn’t pick it. It picked us.

Charity Matters: What life lessons have you learned from this experience?

Sienna Dancsecs:  I learned a lot about the business of nonprofits and how all these things work. Walking into kids’ rooms, every day who were super sick, or they were at the end of life made me realize how lucky I am just to be healthy.  I think it’s something that we all take for granted. So that’s something that I quickly learned,  talking to these kids, watching them fight for their lives, watching them lose their battles to cancer, it was really hard to watch. But it made me so grateful for everything that I have.

It also taught me from a young age, how important it is to give back and to help other people. I feel like it’s a really great gift that I got from Jenny and Josie that I learned that this was something that made me feel so good and made me feel like I was doing something to help other people. And it’s something that I continue to do. I know, I’ll take it with me wherever I go. Prioritizing, helping other people giving back, brightening somebody’s day, even if it’s something small. You never know what kind of difference that you can make.

 

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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Episode 15: Infinite Strength

I have met so many people in a decade of interviewing nonprofit founders but a select few have left a real lasting impression and Roberta Lombardi of Infinite Strength is one of them. We hadn’t spoken in a few years and I wanted to touch base and see what she was up to, you may remember her remarkable story. As a breast cancer survivor, Roberta wondered about the women she sat with in treatment who didn’t have the same resources she did and was determined to change that.

Infinite Strength began to help underserved women with breast cancer with the financial costs associated with breast cancer. are astronomical. I recently had a chance to catch up with Roberta and talk about how Covid has impacted cancer, single moms, her challenges in trying to support all of the above with her incredible organization.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Infinite Strength does?

Roberta Lombardi: We exist mainly to help single mothers who are in active treatment for breast cancer by giving them grants for what we call basic human needs, mortgage, and rent, car, utility, and phone.  I think we’re one of the few nonprofits to do that recurring funding for women with metastatic breast cancer. These are early-stage breast cancer patients who come to us once in a calendar year.  A patient with metastatic breast cancer, who’s basically going to be in treatment for the rest of their life. Their average lifespan at that diagnosis is two to three years.

Charity Matters: What was the moment you knew you needed to act and start  Infinite Strength?

Roberta Lombardi:  I was in the middle of treatment, and was getting more depressed from all the chemotherapy drugs and the steroids and the loss of hair. One day my husband walks into the kitchen and says, “Honey, we just got a bill for one of your chemos from insurance. But it’s $80,000!  Hon, how do people that don’t have money afford this?”  He throws the bill on the counter and it was like a lightning bolt for me.

All of a sudden, it really made sense to me.  How are these women ever going to be able to stop the cycle because it is a never-ending cycle? The woman we help, they’re already having trouble financially anyway.  How do you get off the roller coaster?

Charity Matters: What fuels you to keep doing this work?

Roberta Lombardi: Every single time I have felt a little bit worn out that’s when somebody crosses my path. It reminds me that this is why I do this work.  And it’s the truth. It’s either it’s a patient who’s contacted me, and their story just touches me. It’s meeting their children and seeing what it does to the kids to have their mother ill.

 The women that we support with Infinite Strength, their whole life’s been a battle, they just don’t get a break.  Many of the women we help are black women and are underserved.  They don’t have the access to medical care and this disease hits them harder. Their death rate is higher than a woman that’s white. A lot of these women that I interact with, they’ve just not had a fair shot in life and a lot of things and they’ve struggled. Their kids are a part of this and that’s the heartbreaking part for me. I have to find a way to really make an impact and to give these kids hope that their mom’s going to be okay. Also to remind them that there’s kindness in the world that somebody cares.

Charity Matters: What has your impact been? 

Roberta Lombardi: For me, it’s the emotional impact of the peace of mind, we’re giving to these women. That’s how I measured it. The kind words that they write or when their child says something to me. That is when I know what I’m doing is very worthwhile. And that’s what spurs me on to keep going and to keep growing.

How has this journey changed you?

Roberta Lombardi: I think that one of the biggest lessons I’ve learned is not to be so judgmental. You don’t know what somebody else’s life is. They show you what they want to show you and you don’t know what they’re going through. Right? You just don’t. The more somebody is maybe aloof or maybe not as kind, maybe the more kind I am because they need it. I’ve realized in my work, just that little bit of kindness or a smile, or doing something extra makes a person’s day so much better. And you don’t know where they were at that moment.  It’s little things of trying to be understanding.  I think that’s one of the greatest lessons that I’ve learned.

CHARITY MATTERS.

 

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YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

The Heroes of 2020

If ever there was a year that turned our planet upside is has been this one. Last year we all began 2020 with such hope. A new decade and such expectation that was to come crashing down three short months later. Now we are all counting down the days until 2020 is behind us. As someone who tries to find the silver lining in everything when I look back at 2020 I smile thinking of the amazing humans we met this year. Each of these people gives selflessly to make our world better. I thought today we would look back at some of the remarkable conversations of 2020. And a few highlights.

The Kindness Campaign: Andra Liemandt

We began 2020 by talking to the founder of the Kindness Campaign to learn about their mission to serve the socio-emotional needs of children. This year their work was more important than ever. You can revisit the full conversation, here.

CHARITY MATTERS: WHAT WAS THE MOMENT YOU KNEW YOU NEEDED TO ACT AND START  THE KINDNESS CAMPAIGN?

Andra Liemandt: Suicide is the second leading cause of death among teens. Several years ago this touched my life in a very powerful and profound way when a dear friend of ours took her own life and she was just 12 years old and it was a direct result of bullying.  There was no path for me to start a nonprofit or any inkling that I would be sitting here five years later talking to you about this. That event changed my life forever and was the catalyst for an ongoing healing process with my daughters.

Homelessness:

There are so many incredible organizations trying to help the homeless. This year we met more than a few. These two women especially stand out for their incredible compassion and dedication to serving the homeless.  Heather Carmichael has been working with homeless youth for almost two decades at My Friends Place and  Caitlin Adler works to ensure that the homeless have proper clothing through her nonprofit Project Ropa.

 My Friends Place: Heather CArmichael

Charity Matters: What are your biggest challenges?

Heather Carmichael: There are so many. The landscape around addressing homelessness is under such dynamic change. For years, no one spoke about homelessness and now we have an epidemic crisis. Communities are overwhelmed and LA is in such pain about this. How do we continue to engage communities in meaningful ways so that we maintain momentum towards a solution? 

I feel very grateful to be doing the work at My Friend’s Place, where our main priority is to resolve these young people’s homelessness while continuing to create meaningful opportunities to see the impact and to feel involved. How do we scale to that in a meaningful way? A multitude of things got us here and it will take a multitude of things to fix this. We need to create meaningful opportunities to get our community and supporters involved in understanding and being a part of the solution.

Project Ropa: Caitlin Adler

Caitlin Adler created Project Ropa in 2015 to address the challenges that homeless people face in obtaining and keeping clean clothes. Though homelessness is accompanied by many things, one of its greatest indignities comes from the absence of hygiene services.

Charity Matters: Tell us a little about what Project Ropa does?

Caitlin Adler:  Most homeless people literally have only the clothes on their backs. Access to clean clothing is essential to the overall well-being of a person and can be the key to opening doors to employment and housing. How you look affects how you feel about yourself and how others treat you. Now, because of the health threats posed by the coronavirus, the need to overcome those challenges has become ever greater.

Health:

Claire Marie Foundation: Marianne Banister

When former LA reporter Marianne Banister lost her 17-year-old daughter, Claire to melanoma. She and her husband went to work to get the word out about this cancer and created the Claire Marie Foundation.

Charity Matters: Tell us a little about what THE Claire Marie Foundation does?

Marianne Banister Wagonhurst: When this happened to our family, to our daughter, Claire, we were blindsided. And because even the medical profession did not realize kids could get melanoma at this age. It looked different than adult melanoma and it was more aggressive and more invasive. according to pediatricians. Melanoma is the number two, cancer in adolescence from 10 to 19 and the number one cancer in young adults from 20 to 29. This cancer is the number one cause of cancer death and young women 25 to 30. In young people, this disease is more aggressive and invasive than in older people.

Charity Matters: What fuels you to keep doing this work?

Marianne Banister Wagonhurst:  Claire. There’s never anything that’s going to make it right that we lost her. There’s never any sense to it. But I truly believe this is her purpose. And if I don’t keep this foundation going and do the work that needs to be done, and I’m not fulfilling her purpose, and we would have lost her for no reason.

Brave Gowns: Summer Germann

Summer Germann is no stranger to hospitals, illness, tragedy, or adversity. What is remarkable about Summer is that she uses all of this adversity, including COVID, as fuel for good. She is a bright light who started a nonprofit Brave Gowns and when COVID hit she reached out to her team to begin manufacturing PPE (personal protective gear) in the form of masks for thousands of health care workers across the country. A modern-day hero.

Charity Matters: How did you decide to get into the PPE (Personal Protection Equipment) for COVID?

Summer Germann:  Friday, March 13th  I called my designer and I knew we had to figure out a way to help. We had talked about making masks and families have asked us for years. I knew we could make them fun. I called my factory and told them what I wanted to do and they had already started a prototype three weeks before. I said you have to give me a product that I believe in and this isn’t about money. They sent over the prototype and I said, “Okay, I just launched.” By Monday we had 11,000 orders.

Scarlet C of COVID

I hate to end this year with this story but COVID was the defining story of 2020. This article was reprinted by a number of magazines and publications and had more views than any piece I wrote in 2020 so it was worth an honorable mention on the list.

 While I didn’t interview any specific health care workers but rather organizations that support them, it is worth mentioning that our front line workers were THE true superheroes of 2020.

There are so many remarkable humans on this planet and these are just a few. As 2020 comes to a close and we look to a New Year ahead I think there are so many qualities to emulate that each of these heroes possesses. Tony Robbins sums up these heroes perfectly when he said, “The people who are most alive, driven and fulfilled are those that seek to lead a life of contribution and service. To something greater than themselves.”  Thank you, Andra, Heather, Caitlin, Marianne, and Summer for showing us by example what true service and living a life of contribution looks like. At the end of the day isn’t that what we are all striving for?

Wishing all of you blessings for a most joyous and Happy New Year!

 

CHARITY MATTERS

 

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D’Veal Youth and Family Services

The world has been enduring mental health challenges since COVID began last March. A recent study by the CDC claims that from March to October, the proportion of emergency department visits related to mental health increased 24 percent for children aged 5-11. While teenagers’ (ages 12-17) ER visits spiked 31 percent compared to the same period the previous year. So when a friend reached out to introduce me to John McCall, the founder of D’Veal Youth and Family Services, a nonprofit that has been helping children and families with mental health for decades, I was excited to learn more.

Charity Matters: Tell us a little about what D’Veal does?

John McCall: D’Veal Youth and Family Services is a community based mental health agency that provides outstanding services to children and families. Our motto is to balance children’s lives because children come from families and families come first.

Charity Matters: What was the moment you knew you needed to act and start  D’Vray?

John McCall: I’m from Louisiana. In my senior year of high school, I did an internship at the VA hospital. I thought I wanted to become a physical therapist. My boss came to me one day and she said, “John,  I know you want to be a physical therapist, but I see that you’re writing letters for other patients.  That’s not what a physical therapist does, that’s what a social worker does.  Would you consider spending the remainder of the year interning as a social worker?   I discovered as a senior in high school, I wanted to be a social worker.

I went to Northwestern Louisiana and the University of Houston for grad school. Then headed to California to stay with my sister and I began working at Five Acres. I was promoted from a youth social worker to the Chief social worker, Director of social work, and co-director of the whole treatment program. We were doing these heroic efforts to reunite families dealing with trauma and abuse. I just loved it. One day, and it just hit me. Why isn’t someone doing early intervention and prevention?

In the early 80s and 90s, the intervention was not on anybody’s radar screen. Five Acres gave me free rein to do some of the most innovative things.  And I just kept saying, more needs to be done. If there’s more on the prevention side, you can prevent these things from happening. But there was no money back then for that. And so I had an idea and as fate would have it, I met the right people at the right time to make the idea happen for D’Veal Youth and Family Services. Leaving Five Acres was really hard.

Charity Matters: What do you think makes D’Veal different and sets you apart from other organizations?

John McCall: Our philosophy of mental health has always been different. Mental health is about how you think, how you feel, how you behave. If you don’t think well and don’t feel well. You can’t behave well.  Help is about how you think, how you feel, and how you behave.

So our approach to understanding has always been different. We’ve carved out our niche among the largest number of agencies, and we discovered what we do well and we stick to what we know we can do well.

Charity Matters: What are your biggest challenges?

John McCall: The challenge for us has always been funding. We’ve relied on our contracts and being able to stretch a dollar as far as we could. I would like to leave D’Veal better off than when I founded it.  Historically when the founding director retires the outcomes haven’t been good. And so I’m mentoring someone now who I think is a good fit.

Stress has never bothered me and I’ve always worked two jobs.  Long hours have never bothered me, I just got accustomed to it growing up working hard. But other people don’t have that same kind of stamina. Oh, here’s the other part of my story. I’m a pastor as well. I pastor at a local Baptist Church in Pasadena. And people ask me if it is tiring? The answer is no because I see it as one. Let me understand the people I’m pastoring and trying to get them to grow and help them to lead by themselves.

Charity Matters: You are a true servant leader! What fuels you to keep doing this work?

John McCall: Do you remember the TV show the A-Team? Well, I love it when a plan comes together! If one kid gets better, if one family gets better, then it’s worth the effort. To me growing up in the south, one of my internships was at the state hospital there. I got to see the room where they actually did electric shock treatment. Ah, geez. And when you look at how far we’ve come, just a short time of understanding behavior, understand health, and particularly in the minority community. 

Charity Matters: Tell us what success you have had? What has your impact been?

John McCall:  In 1992 when we began we only had two after-school contracts to service students. Each year the number of kids that we serve increases. When we began our budget was $280,000 and today it is close to seven million dollars. We have seen a 68% growth in the number of clients served in the past five years. Last year we received the Gold seal standard which is the highest rating in our industry.

 Probably one of our most successful models is that we have staff who are trained in multidimensional family therapy. It’s an intense model of therapists’ evidence-based practice model that’s geared for primarily minority families and kids who have substance abuse. Very intense. The kids who complete that program are 80% less likely to come back into therapy.

 In our Family Preservation program (a total of 261 family members)  the overall success rate for keeping families together was 89%, which has been consistent over the last few years. In addition, we are feeding about 20 families per week since COVID started. Those are just a few of our impacts.

Charity Matters: If you could dream any dream for your organization, what would that be?

John McCall: I would dream for us to be the premium model and leader of what to do for community-based mental health, of what community-based mental health should look like. And that D’Veal Youth and Family Services would be the leaders in that and it wouldn’t be based on politics. It would just be based on a service delivery model that we think works. That’d be my dream.

Charity Matters: What life lessons have you learned from this experience?

John McCall: People are people everywhere. People are people and understanding people or human behavior makes a difference. Being a minority leader brings with it its own set of stressors. As a CEO,  I’ve never forgotten the bridges that crossed me over. I’ve never forgotten the people who played the role in my life to help me learn and accomplish.  You know, because of friendships, camaraderie, and collaboration I learned what I know now.

Charity Matters: How has this journey changed you?

John McCall:  I used to be intense and now I am much more mellow. I’ve led protests in community protests. I’ve gone to the city council to advocate for things. And now you look at the bigger picture and I’m now more systematic and bigger picture.  I’ve learned to say no, in 100 different ways. I’ve learned how to be nice about it. I know where I am, where I’m headed, and what I shouldn’t be doing.  I can’t get sidetracked from things that don’t edify or benefit my purpose now.

So close out strong. To know, you can’t control stuff and to do my best while I’m here. And when I go, I want to be gone. I want to release it and appreciate the journey.  

CHARITY MATTERS.

 

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Claire Marie Foundation

Growing up in LA, Marianne Banister was a familiar face on daily on our local ABC news station. She was always reporting from a storm, a flood, a fire…some sort of disaster. When a friend suggested that I reach out to interview Marianne, who now lives in Baltimore, I was a bit intimidated. Marianne and her husband lost their 17-year-old daughter Claire to melanoma.

Their family was determined to fulfill  Claire’s vision to provide clarity and hope in the fight against adolescent and young adult melanoma through their work at the Claire Marie Foundation. They are on a mission to ensure awareness, education, and prevention of cancer that has increased 250% in the last forty years.

Charity Matters: Tell us a little about what THE Claire Marie Foundation does?

Marianne Banister Wagonhurst: When this happened to our family, to our daughter, Claire, we were blindsided. And because even the medical profession did not realize kids could get melanoma at this age. It looked different than adult melanoma and it was more aggressive and more invasive. according to pediatricians. Melanoma is the number two, cancer in adolescence from 10 to 19 and the number one cancer in young adults from 20 to 29. This cancer is the number one cause of cancer death and young women 25 to 30. In young people, this disease is more aggressive and invasive than in older people.

We’re the only nonprofit in the country that focuses on preventing melanoma specifically in adolescents and young adults. We are not trying to treat it and we’re not doing research to find an answer to find the new drug or the therapy. Please, I pray to God we find that tomorrow.  Nobody’s helping to prevent it and that’s our job.

CMF Five Year Retrospective 2019 from Claire Marie Foundation on Vimeo.

Charity Matters: Can you tell us what the risk factors of Melanoma are?

Marianne Banister Wagonhurst:  If you wear sunscreen if you wear up 50 SPF clothing if you don’t go to a tanning booth and if you advocate for yourself. That’s it, then you’re good. I want to add empower yourself to advocate and get at the front of it. Our whole goal is to get people in and connect them with a dermatologist. If you don’t already have a patient relationship with a dermatologist, it can take three to five months to get your first appointment. 

Charity Matters: Can you share some of Claire’s Journey?

Marianne Banister WagonhurstClaire got a routine skin exam at 13, it was November. We had them checked every year, no history in the family, just having lived in Southern California being a reporter being aware of it. We go back in June for her yearly exam and about a week before that the mole on her ankle that she was born with started to change. But it didn’t look like what we’re educated to look at for melanoma. It wasn’t thick, it wasn’t dark. The borders were not irregular, none of that it just looked a little dusty gray in color.

Claire kept it very quiet and to herself because she didn’t want to be put on a shelf with her friends. She didn’t want to have gossip and didn’t want to engage. Claire wanted to deal with it and went out and lived her life. We were very fortunate to live where we do, where we had renowned medical support 10 minutes away.

About her junior year when we thought we were well past it, her oncologist, Dr. Sharma asked her if she would mentor another young girl who had come in the month that Claire was diagnosed.  As we were discussing his request for her to help this other young person coming through it. She said, “Mom, why do you think this happened to us?”

I said, “Maybe being who you are because you’re so positive and energized. And being what I do professionally, you know, maybe we can do this together when you’re ready?” Claire said, “Yeah, when I’m a senior, then it won’t matter. And I can tell people, and I can advocate.”  She still was not quite there yet wanting to share her story. So we knew down the road, that’s what she would want to do. The bottom line is I just couldn’t sit here with this information and not warn other parents. If someone had raised the flag of awareness before us, then maybe she’d still be here.

Charity Matters: What was the moment you knew you needed to act and start Claire Marie Foundation?

Marianne Banister Wagonhurst:  We started with community support. We got launched in October 2014, it will be six years ago this month. Claire’s friends from her school wanted to help and do something.  One of her best buddies since childhood called me and said,” Hey, Miss Marion, do you have a logo?” And I was like, Why? I mean, we knew we were going to do something, but we are just trying to get through the grief and to deal with things.

Claire’s friends did this dance a THON and raised $24,000 called Moves for Claire. I didn’t know how many people my daughter knew. And then friends of other friends and her story carried. There were 500 kids there. And they had sponsorships, and I mean, they went all out. We realized they’re listening and paying attention now. So we need to take advantage of this. If we want to do this in her memory, we have to do it while they want to engage. And they have been our biggest force.

So through them, we then went forward, we have collegiate ambassadors, and they started the program for so they were in the high school class of 2015, college class of 2019. We’ve had just short of 100 kids on 46 campuses. And they do peer to peer education and mentoring and awareness programs.

My husband cycled 620 miles to symbolically take her to college. Claire was accepted to college just a couple of days before she passed. So she got accepted to Georgia, Southern University, Alabama. So he cycled from Charleston to Georgia Southern into Bama. We did this big media raising campaign and because it was a football game that she promised her dad he could go with her. So you know, it was a way of him to process it and honor her, but it was a way for us to raise awareness. We started doing that and running fast.

The kids came up with a lot of these ideas,  they’re all young adults now. We have partnerships since with US lacrosse and we work with the Melanoma Research Foundation, as one of their advocacy partners. We go to Capitol Hill and campaign for funding and support for research. We are developing a relationship and a partnership with Teen Cancer America out in LA. we want to bring our screening program out there, if a young person is going through cancer, guess what that puts you at elevated risk for melanoma.

Charity Matters: What are your biggest challenges?

Marianne Banister Wagonhurst: The biggest challenge for all this is that we’re the only ones out here doing it. We’ve screened 1000 young people, we found 16% have A typical moles that need a biopsy. Funding is still a big issue. We could use a staff of two full people, two full-time people. You know, it’s just me and my husband and the volunteers that pop in and out and help us out.

Secondly is getting our information out there. Awareness education, like this event we’re doing October 3rd, we always try to reach young people in the way that they’ll hear us.  It’s a two-hour Music Festival, with performers from LA Nashville, Baltimore, and Charleston. It’s really it’s a lot of fun. Then of course within that, we’ll have the melanoma prevention messaging built within it.

Charity Matters: What fuels you to keep doing this work?

Marianne Banister Wagonhurst:  Claire. There’s never anything that’s going to make it right that we lost her. There’s never any sense to it. But I truly believe this is her purpose. And if I don’t keep this foundation going and do the work that needs to be done, and I’m not fulfilling her purpose, and we would have lost her for no reason.

When people ask me how many children do you have, although it will be followed by an awkward moment. I just say well, I have two girls, one watches out for me from heaven and the other one is with me here.  I’m not going to say only have one daughter, that’s not going to happen because she existed and she had a purpose. She has changed lives and she has saved lives. We have had a number of young people who have found melanomas early and they always tell me,” You know, I thought of Claire, and I went and got it checked and it was a melanoma.”

Charity Matters: When do you know you have made a difference?

Marianne Banister Wagonhurst: My husband always says if we save one kid, we’ve done our work. And we’ve done that many times over. I think what I’m most proud of is we’re changing the narrative. We’re changing the focus, Claire was overlooked, she was a victim of the system. The system is not broken, but it needs to be tweaked.

Because of us, many organizations are now creating a Young Adult adolescent melanoma focus, in terms of research, and in terms of treatment and support. I know specifically within the melanoma world, we’ve changed that narrative. I think that is what I am most proud of in six years, we’re starting conversations, and making people understand that it’s just not a matter of putting on sunscreen, and calling it a day.  I think it’s changing the narrative of the conversation and elevating the importance and value that young people are getting this disease to the rate they are and that it is not rare.

Charity Matters: If you could dream any dream for your organization, what would that be?

Marianne Banister Wagonhurst:  The dream would be that every young person from two-years-old on should incorporate full-body dermoscopy-based skin screenings every year, as part of their WellCare. When they go to their pediatrician and their eye doctor and their dentist, they see the dermatologist, they get checked, that becomes part of their routine.

 We just don’t want anybody else to go through what we did, because it’s so darn preventable. When you think about it, melanoma is one of the cancers that you have the best odds of seen visually externally on your body. And a screening takes 10 minutes, and you don’t have to drink anything, and you don’t have to get an MRI and you don’t have to get a CAT scan, you just go in a robe, 10 minutes, a dermatologist with a scope. So we just need to it’s a system that’s broken, it needs to be readapted so that would be my dream.

Charity Matters: How has this journey changed you?

Marianne Banister Wagonhurst: I think one of the changes that surprised me is you get a different identity, you realize that life is you cannot go back to life as it was because it’s no longer there. So you have to recreate yourself. I’m in a different world.  So I’ve expanded the people in my life.

 I’ve had a lot of loss in my life and I’ve always lived my life as you have to thoroughly embrace it each day as it is. My faith is stronger than ever because I know she’s fine. I know she’s okay. I absolutely know because I’m telling you as smart as I like to think I am. I am not that brilliant.

This foundation has a life of its own. And as my older daughter says,” Claire will be done with it when she’s tired of Claire show.” Until then, it’ll just keep happening things that just drop in our lap. Opportunities that come up or people we meet that just really like jumpstart us into a new phase. And it’s just like, okay, she’s not done with the Claire show just yet. 

Charity Matters: What life lessons have you learned from this experience?

Marianne Banister Wagonhurst: We’ve been asked this by other parents often how we dealt with the grief. We just had to dig down to this just horrendous feeling and we had to feel but then able to come out the other side. And it seems like to me that at some point of grief you have to process this pain. I think for me because I always remembered that conversation we had about Claire helping others, I know she would be proud of this.  

It’s not that you ever want this to happen, but if it does, to know that something has been inspired by her in a positive way. That’s what we look at.  There was nothing she could have done to control this or affect it and so when that happens, it’s kind of like well, what do we do with this now? Our daughter is having a great impact because of what we’re doing and that’s the best we can do for those we love.

 

 

CHARITY MATTERS.

 

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Our Wave

I have to confess that I have a love-hate relationship with technology. I love being able to share these stories with you every week and I do not always care for some of the social media platforms needed to broadcast this work. However, when I heard about the nonprofit, Our Wave, and their commitment to use technology to build a community of people affected by sexual violence I needed to know more. It is an uncomfortable topic for sure but when you hear the amazing and inspiring stories of these founders, it is truly a story of hope.

Charity Matters: Tell us a little about what Our Wave does?

Kyle Linton: We really started Our Wave in 2018 with the idea that we wanted to better support survivors of sexual trauma and give them a mechanism to anonymously share their stories.  What we found was that there are all these opportunities for people to share their stories, which are incredible, but they’re very public.  Survivors wanted to see other people’s stories, they wanted to share their own story, but they didn’t necessarily want to do so publicly.

Since we’re technology design people,  couldn’t we create a platform where people could share their stories anonymously, but more so than just sharing?  Could we try to lean into the healing components and leverage research to give people resources as they’re sharing their stories and finding the things that they need so that they can move past their previous instances of trauma? 

Laura Sinko:I had met Kyle at a sexual violence conference because unlike Kyle being tech and design, I am a nurse by training. I’m also a researcher. And so my research was in healing after sexual violence. When I was interviewing survivors, I noticed this gap where people were really longing for community and really longing for a place to really say their truth and also just process their truth. Because I think sometimes you keep it inside and you don’t really even know how to put words what happened.

So I had stumbled across them on a table and they were saying, we want to create this platform. And I was like, me too, but I have no skills and design or tech. I would say that the vision is really to help people tell their stories and then connect them to a community, help people learn from each other, what works for them and what doesn’t.

Charity Matters: What was the moment you knew you needed to act and start Our Wave?

Kyle Linton:  In October 2018, someone in my life, directly experienced sexual violence. Somebody that was very close with and,  for me, it was a really difficult period. Because I was trying to figure out a bunch of different things. I was like, how do I support this person? How do I help them?  And even as I’m feeling all of these things, I can’t even imagine what this other person is feeling who experienced it firsthand.

Then I realized that I am privileged enough that I have the opportunity and experience building companies and products. So I said, “Well, I have the capacity to do something here.” So, I kind of got this idea of, what if we could create a place where somebody like this person very close to me could go and see other survivors and get support and find healing resources?

I started just kind of pulling people from my life and in saying, “I would love your support on this. If you have time?”. Then we found Laura at a conference. I said, “let’s bring it all together into this thing that can help survivors, and then let’s try to scale it like crazy?”  So, that’s really where it started. 

Charity Matters: Was there a back story that led you to this type of work?

Laura Sinko: Unfortunately, being a woman on a college campus, I felt like it was happening to so many of my friends were experiencing these sexual violence experiences. So I got really interested in sexual violence since there are so many people in my life that were struggling to find healing. A lot of the work especially in medicine and nursing is focused on that deficit, like you have trauma, you have depression, anxiety, and there’s so little focus on the healing aspect.

I was getting my Ph.D. in nursing, smack in the middle of my program, when I had my own experience of sexual violence. It was interesting because being a quote-unquote, “expert”, right? You think oh, I’m an expert in healing after the violence. I’m gonna be set. I can do all these amazing things because I know what to do. I have all the tools and it’s different when it’s yourself. It’s a totally different beast.

And so that’s why, for me, it’s really important to really build that community because you can often feel like you’re all alone if you don’t get to share your story in some way. That is that moment when you know this isn’t okay. This just isn’t okay.

Charity Matters: What are your biggest challenges?

Kyle Linton:  I think the biggest challenge for anybody doing this kind of work is how do you stretch, you know, minimal resources to make the most impact?  The beautiful part about our organization is that because it is a technology platform, it has the potential for a massive scale. The trick for us is trying to support all these different populations and individuals who have these different levels of need.

Laura Sinko: For me, being the grant writer of the group, I think funding is our biggest challenge. I mean, it’d be nice for all the work that people are putting in if we could pay some of our staff for their work. And that’s not really me or Kyle, but the designers that are doing all of our content and all of these other people who are really putting in a lot of work. So that’s why my thing is the funding, it’s always about funding.

Charity Matters: What fuels you to keep doing this work?

Kyle Linton: I grew up in a household where my mom has run a nonprofit for 20 years maybe. She’s amazing. I grew up in a household that was comfortable and it gave me the opportunity to do impactful work.

 I’m incredibly thankful for growing up with that sort of motivation.  I was not encumbered with student debt and it gave me the opportunity to try to leverage my skills to help people. I’m in a position to do that, and a lot of people aren’t.

Laura Sinko: So for me, it really it truly is this the survivors.  I was a mental health nurse for a while I’m now a sexual assault nurse examiner. Over the past four years, I have met just countless amazing survivors who have given me the privilege of hearing their stories and hearing their struggle. Whenever I have to write a grant or something that feels really daunting, I have this ritual where I like will light a candle and remember why I am doing this.

 It’s like bringing the survivors in the room with me, the people that are counting on me to and our team to really push this forward. And I will also say that being a part of this team of eight completely volunteers, people that give their evenings to this work their weekends to this work. I think that is also incredibly important.  Not every team has that cohesion, but I think we do which was really helpful.

Charity Matters: When do you know you have made a difference?

Kyle Linton: One of those moments is we ended up developing a presentation that we shared with USA Gymnastics. Obviously, everybody’s depressed and seeing things that are going on and we were able to share seeing the silent signs of sexual abuse. I remember I was in the zoom call helping moderate and support and a survivor of Larry Nasser popped in.

That moment made it clear and sort of brought to life, all the things that we’ve heard and the ability to sort of support individuals who have gone through unbelievably traumatic and difficult things. That moment sort of just brought that to the forefront of our minds and was pretty incredible that we as a tiny nonprofit have the opportunity to potentially impact somebody like that.

Another moment for me was really, this campaign we have been doing with this Instagram account called Unapologetically Surviving.  It is an account that’s grown from 60,000 to like, 140,000. The account specifically talks about healing, supporting survivors, and just being a light at the end of the dark tunnel.

We did a partnership with them where our team takes these questions that survivors have.  And we’ve seen like 10,000 people liking some of these posts and engaging. It’s just crazy to see that a simple cold email that said, “Hey, we’d love to work together. Can we share some of our work with y’all?”  So it’s just been a very just beautiful example of the potential impact we have. 

Laura Sinko: It’s really been the FAQ Fridays. I think putting some questions that I kind of had when I first started experiencing these things, like, how do you manage triggers? Have you ever had that moment where you’re not really sure if it actually happened and you doubt your experience?  It’s like, we’re all looking for the same answers.  I think that participating in that has been really helpful to see really that we’re all are experiencing different things.

But there is some common thread between all of us, no matter how you feel. What we do is all about creating connections and community. That’s really the essence of what nonprofits do is bringing people together to help each other to solve something that’s at the core of what we do. So being able to build a big community like that in such a short time is so incredible.

Charity Matters: Tell us what success you have had? What has your impact been?

Kyle Linton:  I think that between the content and the platform that we have created we are somewhere between 100 and 200,000 survivors that we’ve been able to access and engage with and support in some capacity. Obviously, our aim is to increase that.  We’re lucky as a technology organization that the number one thing that we have to our advantages is that scale and that ability to very quickly expand our efforts and reach that many people.

Laura Sinko: I think with social media, specifically, the direct messages, I just pulled up one now because it made me feel so good. This person said,” I just wanted to say how grateful I am to have found your page. I’ve struggled with what happened to me. So I really like to say thank you. I know you don’t know me, but just existing You make me feel seen.” And I feel like that is just something that when you think of impact is so important. The thought of being seen when you feel so alone is what keeps me going. 

Charity Matters: If you could dream any dream for your organization, what would that be?

Kyle Linton:  My dream would be to have a full-time staff that can run it this all day every day.  We could increase our outreach efforts and scale this thing. Our vision really long term is what if we could create this online platform where I’m a survivor and I come to tell my story, and I could be at all kinds of different stages of my healing process.

Laura Sinko:  I think really, for me, it’s creating a place basically a virtual healing space. I think so often we rely on people to find their own therapist the battle with their own insurance and all of this is really important to healing. But I noticed more and more particularly young people they’re looking for things online they’re craving that online community for that self-exploration from home. So if there’s a way we could increase access to healing opportunities, I think that that would be my grand vision. 

Charity Matters: What life lessons have you learned from this experience?

Laura Sinko:  The main thing that I learned is that it’s possible to have an idea that you think fills a need and to and to go out and do it. I think for me, in the clinician role I noticed this gap and I was like,  I’m just a nurse, I can’t do this.  That is really important for to like, no matter who you are, or where you’re at if you have an idea and you think it feels a need, and it’s really going to help people, take a chance on yourself because I feel like you can do so much good for other people.

Kyle Linton: I think internally, it’s been incredible to see how people many people want to give back and contribute to helping other people. I think that’s been really surprising to me. I mean, even just outside of our core team, the number of volunteers that we have that come to us and say,” Hey, I’d love to get back and contribute in some way.  I just want to help.” It’s been, it’s been really inspiring to just see how much people want to contribute.

 I would say just from a purely like, execution, and team standpoint, it’s been really amazing to see what we can do with absolutely no resources and to figure out how to be scrappy and how to create something from absolutely nothing and to have it be so purely good. 

Charity Matters: How has this journey changed you?

Kyle Linton: I think for me, the biggest one would be understanding all of the different things that people experience at different points in their life. And then seeing how that impacts them in so many different ways that I could have never imagined really getting a much level deeper level understanding of trauma.

I think makes you more empathetic, thoughtful, and makes you want to listen to people more because this happens a lot more than you can imagine. And it affects people differently. So, really learning to be empathetic, to listen, and to understand has been really beneficial to me.

Laura Sinko:  I think for me, there’s like two things that it has helped. One is I think more internal and I think one is more external. For me, being a nurse, a teacher, researcher, I’ve been in mostly spaces where I’m holding someone else’s trauma. I try to really detach and it’s not about me, it’s about you. This opportunity has really allowed me to look inward in myself and think about if I’m going to be like leading this effort, I got to really do my own internal work to make sure I’m in the right place.  I’m telling everyone else being a survivor is not something you should be ashamed of. I have to practice what I preach here.

So the fact that I’m even like saying this, that it happened to me and it doesn’t make right weaker, it doesn’t make me any less competent. It doesn’t make me a worse researcher, a worse nurse. In fact, I think that there’s a myth that actually helps me understand in a serious way. So I think that piece for me personally has been really beautiful.

But on the other side, I think connecting with folks like Kyle, who maybe didn’t experience it himself, but have that drive to give back. I’ve just been shocked by the people who maybe haven’t had that in their own personal life in terms of direct harm, but still feel compelled to come forward and help. People say,  look for the helpers, but like seeing those wanting to help has really given me a lot of hope for the world. We do this for hope to help other people to move the world forward a little bit,  one person at a time. That’s why we’re here.

CHARITY MATTERS.

 

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Project Hope

Every day the news around the globe seems overwhelming. Where there is darkness, there is always hope. Never did I feel that sense of hope more than from my inspiring conversation with the CEO of Project HOPE, Rabih Torbay, earlier this week. When crises happen around the globe, hurricanes, floods, war, pandemics, Project HOPE is there. The news may tell you every night that the world is dark but I can guarantee you there is hope.

Charity Matters: Tell us a little about what Project Hope does?

Rabih Torbay: We play our role in making people’s lives a bit better. As you probably know, Project HOPE has been around since 1958. So we’re a little bit over 60 years old. And our focus has been mainly on training health workers. Because we believe that the solution isn’t the hand in the hands of the healthcare workers working all over the world, especially the first responders.

So when you go to any disaster area, or when you go to places in Africa, and you see who’s actually carrying the load is the health care workers. So we focused quite a bit on doing that through different interventions. disaster response is one of them whether it’s a hurricane or an earthquake or as We’re seeing now with COVID-19 as well.

We have doctors and nurses that are deploying that are helping other doctors and nurses that are training them. We’re sending supplies, we’re supporting them. We’re empowering those first responders on the ground to do a better job as much as possible. We also focus on infectious diseases, whether that’s HIV, tuberculosis, or COVID-19. We work at the community level because, at the end of the day, the communities have to own the problem. And our role is not to solve the problem for them, our role is actually to support them and empower them because they have the solutions.  We really take pride in, in terms of empowering and supporting those communities to solve those problems.

Charity Matters: Has Project Hope’s Strategy always been a community-based approach?

Rabih Torbay: It has been right from the beginning. You know, Project HOPE is people.  It’s people to people. That’s how we connect. And it has always been the community, it has always been the doctors and nurses on the ground. And for us, the last thing we want to do is replace them. Our job is to support them and working at the community level working at the clinic level, the hospital level.

We go and ask them, “What do you need? What kind of support do you need? How can we help you?” And that’s how we come in and help them whether it’s an infectious disease or chronic diseases, and maternal and child health, especially the newborn health, which is a focus for us. That’s, that’s what makes us different than that’s what makes us special.

The Back Story

Charity Matters: Tell us the journey that lead you to Project Hope and this Humanitiarn work?

Rabih Torbay: I wish I could say I planned it all but I didn’t. I’m a civil engineer by background. So I have no health, education, or health background. And I grew up in Lebanon during the Civil War. And after the Civil War ended, I ended up going to Sierra Leone in West Africa. Initially, the plan was to go for two weeks and I ended up you know, stretching that to nine years.

It was during the Civil War, and I was still doing construction work with my civil engineer. There was a cholera outbreak on an island. And somebody asked me if I would volunteer for their organization and represent them for a couple of weeks until they send a team. So I said, “Sure, I’ll help out, although I have no idea what I’m going to be doing because again, I’m not a health care person.”

And I ended up going to that island. We took a hand canoe with an outboard engine, it took us four hours in rough seas.  But we made it to the island. There are always those triggers that change people’s lives and this was mine. I got to the island which has about 10,000 people, very poor. They had one clinic and one nurse in that clinic. So I walked into the clinic and people were dying from the current outbreak. There was a sick baby by the door. The clinic had no roof, no windows. And frankly, the nurse was actually sleeping. He was drunk and sleeping.

So I walked in and I spoke to the nurse, and I asked him, I said, mean, people are dying. What are you doing? You’re sleeping and you could smell alcohol. And he looked at me said, I have no medicines. I have no medical supplies. I have no support. All I’m doing is seeing people die. What do you want me to do?

And for me, that was a wake-up call.  That baby was dead, the one that I saw at the entrance. So I went back, I went back to the Capitol and I said, “We have to do something.” With a little bit of money that I had, we bought some medicines, we bought some IV fluids, we bought some chlorine. And that’s when I used my engineering background to start coordinating the water and making it clean and we went back to that island.

And from when we went there, the first time there were about 100 people dying every day, within a week, it went down to two people, and within 10 days, there was no more death. Oh my god. And it showed me what a little smart investment could make in terms of an impact on people’s lives. So that’s an I never looked back. That was 1999. And I started doing this work. And yeah, it’s been, it’s been amazing ever since.

Charity Matters: What are your biggest challenges?

Rabih Torbay: I think one of the biggest challenge challenges is getting people to know what’s going on in the world. When people hear only bad news, they don’t react to the good news that’s going on. So one of our challenges is to bring what we’re doing in the field, whether it’s in Africa and Asia and Latin America, or here in the US, so they would know that there’s a lot of good still happening and that they can actually contribute to that they can do some of they can participate in some of that good.

And that’s why we’re holding the event on Wednesday (tonight). You know, to really bring what we’re doing in the field, to people’s minds to people’s eyes so they can see it and feel it and feel that this they can actually contribute to a good cause. Instead of you know, wallowing in the negativity that we have these days.

Charity Matters: How would you recommend people start getting involved?

Rabih Torbay: Sometimes we look at the problems around the world and it’s overwhelming and we think you know What can I do about it? You know, right, my $1, $5, one hundred dollars isn’t gonna make any difference with the huge problems that we’re facing. And the reality is everything counts every single penny, every single thought and action comes, even for people that cannot donate.

If they spread the word about, what Project HOPE is doing about the needs. And it’s not about us. It’s about the people that we’re helping, right. It’s about the women and the children that we’re serving. If people can spread the word or donate or volunteer, all of that has a huge impact. 

 We actually show them that the world cares about them. So we will present that hope that people need because at the end of the day if people have hope they can survive to the next day with the hope that something good is going to come. Right. And that’s what we do. So partnering with, with our donors, whether the $1 donor or the $100,000 donor, is actually what enables us to provide people with health care and hope, and hopefully a brighter future.

Beirut, Lebanon. Photo by Firas Atani for Project HOPE, 2020.

Charity Matters: What fuels you to keep doing this work?

Rabih Torbay: People always ask what keeps you going? I mean, it’s that human resilience that we underestimate the human resilience is amazing. Whether it’s the people that I saw in Beirut when I went and visited after the blast in Beirut, or in Sierra Leone, or Iraq or Afghanistan.

People’s resilience is what makes us work harder when you see them that they’ve got nothing, but they still have a smile on their face. And they’re pushing forward. They’re trying to make ends meet, they’re still trying to provide that gets the same way we want to provide of our kids, put them to schools, make sure they’re not sick. I mean, when you see How can you give up? How can you sit back and say, okay, I’ve done enough?

Beirut, Lebanon. Photo by Firas Atani for Project HOPE, 2020.

Charity Matters: When do you know you have made a difference?

Rabih Torbay: People think that we’re actually helping others when it’s very reciprocal. When you go to a place like Beirut during a blast, and you see the youth who came from all over the country to help clean up the streets, help pick up the pieces, volunteer, donate money, donate medicines, donate food, and they’ve got nothing themselves, but they brought whatever they can to help. I mean, how can you not fall in love with people like that?

People that are actually doing and it gives you an unbelievable sense of, you know, a humility.  They don’t need a hand up. Nobody wants a hand up.  People need a helping hand people and need to be able to help each other and help themselves with pride and with dignity. To be in a position where you could actually help them achieve that. It’s just amazing. It doesn’t get better than that.

Charity Matters: Tell us what success you have had? What has your impact been?

Rabih Torbay: How can you put a price on somebody’s life? You know, how can you monetize that? How can you say, life is worth $2? That’s life is worth $100,000. Right? You start looking at that. But that being said, donors want to make sure that their money is going to the right people, and that you’re maximizing the impact of that money, and the money’s not being wasted. And, and for us, it’s critical. We take that very seriously.

We work hard for every single cent that we get from our donors. And we appreciate every single sound because we want it we you know, every cent counts and it saves people’s lives.  And one of the most impactful things that we do is actually training. Now, think about the multiplying factor of the training of doctors. If you go in as a doctor and treat 10 patients, that’s fantastic. You’ve just saved 10 patients.

But if you go in as a doctor or as a nurse, and you treat five patients and you train one doctor, who in turn will actually everyday treat 50 to 100 patients, look at the impact of your money, and put the potential of those doctors and nurses will train other doctors and nurses. So the model is the biggest return on investment that anybody could ever have, especially when it comes to health care workers.

And for us, that’s why everything we do, whether it’s during a disaster response or a program that deals with maternal and child health, or tuberculosis or HIV, or diabetes, training of healthcare workers is critical. Because that is the one thing that we leave behind. You can build a clinic, it could get destroyed, right? You can provide medicines and medical supplies don’t get used and they run out. But when you train people, that knowledge stays behind. And it’s a permanent knowledge. And for us, that is the most impactful work that any organization can ever do.

Charity Matters: If you could dream any dream for your organization, what would that be?

Rabih Torbay:  I don’t think it’s going to be achieved in my lifetime. And I hope it does, which is that Project HOPE and other organizations like project top are no longer needed. Because that means the world is in a much better place. Now more realistic and immediate The dream for Project Hope is that we really reach more people.

When you ask about, you know, what keeps me up at night, obviously the safety of our staff,  the next disaster that’s coming, can we actually respond? Can we get the resources to respond to those disasters? Can we actually make sure that we deliver training and we deliver services during COVID-19? The one thing that always keeps me up at night is who we could have reached that we didn’t? 

Charity Matters: What life lessons have you learned from this experience?

Rabih Torbay:  You know, as an engineer, you want certainty about everything you do, right? You want to know everything before you make any decision, for me, one of the most important things that I’ve learned,
especially stepping away from my engineering world is taking risks.

Take a chance on people take a chance on people’s resilience, take a risk, do something that your gut tells you. It’s the right thing to do. And your brains tell you No, it’s not. Listen to your gut instinct much more than you listen to your brains all the time. And taking a chance on people and believing in people’s goodness goes a long, long way.

Beirut, Lebanon. Photo by Firas Atani for Project HOPE, 2020.

Charity Matters: How has this journey changed you?

Rabih Torbay:  I’m am a completely changed person from focusing on my company and making money to really focusing on how can we improve as a society. It is no longer about me, it’s no longer about my family. It’s always now about the entire society, how can we help each other?

And, you know, having grown up in Lebanon during the Civil War? I didn’t know that was in me because you grew up in a war and you always wanted somebody to help you. You always want somebody to stop the bomb, and you wanted somebody to make sure that you get food.  This was in me the whole time and I had no idea.

Suddenly, you know, it came back out. And I was like, look, it’s about people. It’s about that extra step. So for me, the one thing I choose is the fact that I can never get enough. I never stop. Whatever I can do. I want to do a little bit more. Some people think I’m crazy. Some people think I’m a workaholic. I just love it. And the second thing is, I love my job. I’m telling you doing seven years of engineering, I hated every second.

We’re all in this together. We’re all in this to help the next person and I’m forever grateful for Project HOPE to give me the support you need to actually work for such an organization. It’s just my dream come true.

 

CHARITY MATTERS.

 

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