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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:
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Episode 27: The Pollination Project

I have to confess, I have never been on a dating site. Recently, one of my team suggested a site called PodMatch. While not a dating app, rather an app for connecting podcasters and guests. I admit, I was skeptical but willing to try. Through the most unexpected and roundabout way I had the privilege of being connected to today’s amazing guest, Ariel Nessel the founder of The Pollination Project.

Ariel is a successful real estate developer by day, a practicing yogi and an inspirational human being. You are not going to want to miss this incredible conversation about what inspired Ari to rethink philanthropy and create  The Pollination Project.

Here are a few highlights from our conversation:

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

Ariel Nessel: When you think about what is the most synergistic form of relationship in the world, people often point to pollination.  The reason is because  you can’t have a distinction between who is giving and who’s receiving in that relationship. That’s where the name, The Pollination Project, oriented from.  Like our name, pollination is a process that starts out small but has a huge impact.  Our theory of change is that we work on small grants. We are supporting individual changemakers  who feel a unique calling to be of service in the world.

Our grantees do this work on the basis of volunteerism, as opposed to a place of occupation. We’ve given out over 4000 grants and  most of the grants are $1,000 each. We also provide service to support our grantees in their unfolding journey of service. We’ve placed grants into over 120 countries. The commonality of all the things is that we are creating something that develops more compassion in the world. Compassion, for me, is defined as the longing to reduce the suffering of others.

Charity Matters: What was the moment you knew you needed to act and start  The POLLINATION Project?

Ariel Nessel: I’ve been active in philanthropy,  before founding The Pollination Project, as an as an advocate for things that I really cared about. Through that process I started giving and contributing to different groups that I thought were doing really good work in the world. My journey of philanthropy deepened but it wasn’t as fulfilling as I would have liked. I was writing bigger and bigger checks but I wasn’t feeling nourished inside by a bigger check.  It was the intimacy I had with philanthropy that felt like a cog in the wheel.  I felt like there was so much more to offer than financial capital.

So what came up for me was this question of how can I expand what I’m calling to offer? How can I feel more engaged in the world than a few minutes being generous, financially?   How can I support and nurture and empower the most good from people? What came out of that was this idea that there’s probably some other people who want to do good in the world.  How do we find those people, make them and acknowledge them? Then, how do we make them move from that point, too wouldn’t it be great if I did something about that?

So the idea that came out of it was to give one grant a day.  Picking a whole network of people to work with in different movements who are asking these questions for themselves. Then to figure out which of those people are at the right point in their unfolding path to to be resourced with these grants to do something in the world. That became The Pollination Project.

Charity Matters: What are your biggest challenges?

Ariel Nessel:  There have been myriad challenges along the way. Early on, it was the question of how do we find these people? You want to give a grant every day, you want to find good people. So how do we locate those people? Further down as it was unfolding, became how do we provide more than money? What is it that people really need? Other problems, that came up were questions like how do we change the focus for our grantees? We wanted to know who they become by accomplishing their project?  

We’ve seen so many people who, as they grow their projects,  their original motivation gets lost. Sometimes it becomes about building something, as opposed to like leaning into that seed within them that they cared so much about. How do we  nourish that seed of caring?

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

Ariel Nessel: I think one of things I’ve learned from my business experience is that what gets measured gets done. So it’s really important, what we measure what we’re paying attention to.  For The Pollination Project we have how many grants we’ve given. We measure do they do what they set out to do? How many volunteer hours were provided in it? What do they write about how they were changed the process? Who was who was affected by their project? What percent of our dollars go to grant making versus overhead.?

The impact to be able to tell almost 5000 stories becomes really important to us. And even the stories that aren’t always a success.  It’s not like it’s only worthwhile celebrating if you accomplished what you wanted to accomplish. Our failures often lead to greater success down the road. What do our grantees learn in the process of their mistakes? This is what’s beautiful about the $1,000 grants, they’re small enough that we don’t get attached to every one of them working out. What do we learn from the ones that don’t work out? Where do those people who try it and “fail”, what do they learn from the process? 

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

Ariel Nessel:  I think the biggest dream I have is knowing that we played an enormous part in uprooting apathy around the world.  So that anyone who ever had their own dream of how they can use their unique knowledge to make the world a better place, does something about it.  So that these change makers knew that someone saw them, acknowledged them and was there to resource them. That there were so many grantees around the world that it wasn’t just us but that people copied us all around the world. So that philanthropy wasn’t just done by giant organizations, but there were innumerable smaller positions and individuals resourcing anyone who felt a similar calling.  I think that would be my dream.

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

Ariel Nessel:  So many lessons but asking what do I want for the world? And how can I be a person who helps manifest that? How do I live as an exemplar of what I wish for the world?  Because purpose is such a big part of my life, I’ve created this acronym on what to engage. The acronym is pursue.

P is for personal transformation. Where do I need to grow as a human being?  I started The Pollination Project where I wanted to grow and be able to see the best in others. I wanted to grow having a daily practice of generosity and feeling a deeper embodied sense of service.

The U is for unique.  Where am I uniquely positioned? What am I uniquely called to do?  I felt really called to support changemakers.

The R is for relationships. What are the relationships I have? Which ones do I get to spend more time with those people I really care about and want to learn from?

 The S is serendipity or synchronicity. What is life pushing me towards? What success are you manifesting without too much effort?  Where is there a sense of ease like a finesse that comes from things? 

The U is for understanding.

The E is for external transformation or efficacy. Asking, where can I have the greatest impact? So I try to integrate that with all these other parts of it. A big part of the worlds problem is apathy and indifference. One way to address that is to demonstrate that there are people who have moved beyond apathy.

Charity Matters: How has this journey changed you?

Ariel Nessel: I think that all of the above has really changed and made this path so much more joyful for me. This is why a harvest approach seems more appropriate to me than the activists. There’s not an exhaustion when you’re just going where there’s flow. You don’t get tired. Rather, it’s a regenerative energy. There’s a joy to giving, to service and life.

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.

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Cancer

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.

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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.

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Gordie, a story worth retelling 17 years later

Gordie's story

This week we are heading to Texas for Parents weekend to see our youngest son.  He attends a big college football school where weekends included tailgates, football games, and obligatory fraternity parties. With so many students heading off to college and parents concerned about COVID and so much more, it seemed like the right time to reshare this story.

Gordie Bailey was a college freshman who died of alcohol poisoning from hazing his freshman year of college. September 17th marks the 17th anniversary of Gordie Bailey’s death.  His parents created a nonprofit organization, The Gordie Center,  as Gordie’s legacy to educate college students about drinking.  The story is tragic and the lesson is invaluable. Sadly, it needs to be told over and over to each new generation of college students.

Loss

So often we do not make discoveries or connections until it is too late.  We do not realize the value of a friend until they have moved away.  We do not appreciate our children until they have left for college.  Often, we do not realize the value of one’s life until it has passed.

Why is it that we wait to make these connections? How is our hindsight is so crystal clear and our day-to-day vision so clouded? This story is perhaps no different. However, the beauty of it lies in the ability to take that clear vision and create something that matters.

This month thousands of college freshmen have left home. Many students are beginning the process of Rush as they look to make new homes away from home in sororities and fraternities across the country. That is exactly what Gordie Bailey did in September 2004, as an 18-year-old freshman at the University of Colorado at Boulder.

Gordie’s Story

Gordie, a fun-loving freshman who had been the Co-captain of his varsity high school football team, a drama star, a guitar player, and a walk-on at Boulder’s lacrosse team was adored by all. He pledged Chi Psi. On the evening of September 16th, Gordie and twenty-six other pledge brothers dressed in coats and ties for “bid night” and were taken blindfolded to the Arapaho Roosevelt National Forest. There they were “encouraged” to drink four “handles” of whiskey and six (1.5 liters) bottles of wine.

The pledges were told, “no one is leaving here until these are gone.” When the group returned to the Fraternity house, Gordie was visibly intoxicated and did not drink anymore. He was placed on a couch to “sleep it off” at approximately 11 pm. His brothers proceeded to write on his body in another fraternity ritual. Gordie was left for 10 hours before he was found dead the next morning, face down on the floor. No one had called for help. He was 18 years old.

Turning Grief into Hope

The nonprofit Gordie Foundation was founded in Dallas in 2004 by Gordie’s parents as a dedication to his memory. The Gordie foundation creates and distributes educational programs and materials to reduce hazardous drinking and hazing and promote peer intervention among young adults.  Their mission is committed to ensuring that Gordie’s story continues to impact students about the true risks of hazing and alcohol use.

There has been at least one university hazing death each year from 1969 to 2017 according to Franklin College journalism professor Hank Nuwer. Over 200 university deaths by hazing since 1839.  There have been forty deaths from 2007-2017 alone and alcohol poisoning is the biggest cause of death. As Gordie’s mother Leslie said, “Parents more than anything want their dead children to be remembered and for their lives to have mattered.”

In almost seventeen years, the Gordie Foundation which is now re-named Gordie.Org has made an enormous impact on hundreds of thousands of students across the country through its programs and educational efforts. If you have a college-age student, think about asking them to take the pledge to save a life, possibly their own.

Why is it that we wait to make these connections? How is our hindsight is so crystal clear and our day-to-day vision so clouded? Why is it that we do not know the value of one’s life until it has passed? Perhaps more than a decade later, our vision is becoming clearer and we realize just how precious each life is……

Charity Matters.

 

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September 11th Twenty years later

We all remember where we were on September 11th, 2001. It is a moment forever burned into our memories. The people we called, the shock, the horror, and the enormity of it all was more than one could process. None of it seemed real. Tomorrow, we will honor the 20 year anniversary of that fateful day that changed the world forever.

Remembering September 11th

It was a day full of loss and unparalleled tragedy.  The 2,977 lives lost that day, the 6,000 injured, the first responders, the plane in Shanksfield, and the Pentagon. The ripple effect touched every single person in this country. However, like all losses, amazing things came out of it. That day we saw the best in humanity as people helped one another. First responders rushing up the stairs to save people and strangers helping strangers navigate their way out. Our country came together in unbelievable ways, hanging their flags, donating to causes to support the victim’s families, and coming together in an unprecedented unity showcasing to the world the best of America.

The Best of America

We as Americans didn’t stop there because we are a country of doers and action. One of the beautiful legacies of September 11th was the incredible amount of nonprofits that were created. The IRS fast-tracked over 300 charities in the wake of September 11th to serve numerous causes. According to the IRS by 2006, as many as one-third had closed. Many of the organizations that completed their missions such as The September 11th Fund and The United Way of NYC distributed more than 534 million dollars to victims, their families, and first responders.

A lasting legacy of Service

According to the Nonprofit Times, today there are still at least twenty-eight nonprofits still in existence. The 9/11 Memorial Museum an experience that every human being should have and a lasting tribute to that fateful day. Families of Freedom Scholarships have provided over $178 million dollars to over 3, 759 children of 9-11. Causes such as Tunnel to Towers which was created in memory of Stephen Siller. He was a firefighter who gave his life to save others that fateful day, along with 343 others. This year Tunnel to Towers will give 200 mortgage-free homes to our nation’s heroes. This year 9/11 Day.org  is asking all of us to come together and to do a simple good deed tomorrow. Please watch their video above.

September 11th was one of the worst days in our nation’s history but it did bring out the best in all of us. We came together in kindness, in compassion, we helped our neighbors and hung our flags. We realized that we are all Americans. Tomorrow is a new day and another chance for all of us to remember and come together once again in unity and compassion.

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.

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

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Episode 23: Our Wave

Last year when we were contemplating a podcast we had an incredible interview with two amazing nonprofit founders about their nonprofit, Our Wave.  As thousands of students head back to college this month it seemed like a good time to revisit our conversation with Kyle Linton and Laura Sinko on the topic of sexual assault. While never a comfortable topic, it is an important one.

There are more than 433, 638 sexual assaults in the United States each year. Join us today for an insightful conversation from two incredible perspectives about the new and exciting ways Our Wave is bringing healing to tens of thousands through their work.

Here are a few highlights from our conversation:

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 stories, but they didn’t necessarily want to do so publicly.

Since we’re technology design people, we wanted to create a platform where people could share their stories anonymously. We wondered if we could try to lean into the healing components and leverage research to give people resources as they’re sharing their stories and help them move past their previous instances of trauma? 

Laura Sinko: I met Kyle at a sexual violence conference.  I am a nurse by training and am also a researcher. 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 for a place to really say and process their truth. Because I think sometimes you keep it inside and you don’t really even know how to put words what happened.

 I stumbled across Kyle and heard him saying he wanted to create this platform. His vision is to help people tell their stories and then connect them to a community. Kyle wants to help people learn from each other, what works for them and what doesn’t… really resonated with me.

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.  For me, it was a really difficult period because I was trying to figure out a bunch of different things. I wondered, 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 have the opportunity and experience building companies and products. So I said, “Well, I have the capacity to do something here.” I got this idea, what if we could create a place, where somebody like this person very close to me, could go and see other survivors to get support and find healing resources?

I started just kind of pulling people from my life and 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 who 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 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 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 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: I think funding is our biggest challenge. It would 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 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 had 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:  For me, it really 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 struggles. 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 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?

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 advantage 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: 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, go out and do it. I noticed this gap and thought, I’m just a nurse, I can’t do this.  That is really important 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. What’s been really surprising to me, even just outside of our core team, is 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 really inspiring to just see how much people want to contribute. I would say 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:  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 seeing those wanting to help has really given me a lot of hope for the world. We do this in the 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.

 

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.

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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:
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.

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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.

 

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Season Two Episode 18: Distance for Difference

Welcome to Season Two of the Charity Matters Podcast! For the past decade, I have focused all of my attention on organizations based in the United States that help people. With over 1.5 million nonprofits in the United
States alone, it seemed like a reasonable perimeter. Like I mentioned last week, people often come into your path for a  reason. When a mutual friend connected me with today’s guest I knew that rules were meant to be bent every now and then.

Stéphan Pieterse is the founder of the South African nonprofit Distance for Difference. His story of challenge, faith, and resilience is one for us all regardless of our country of origin. Stéphan and I  spoke a few months back and he referenced the corruption and social unrest that they were experiencing at the time. This week’s news has more violence in South Africa and is a perfect time to share Stéphan’s message of hope, love, and goodness.

Here are a few highlights from our conversation:

Stéphan Pieterse: What an honor and privilege to be with you today. And you know, hopefully, I’m the first of many stories you can start to share worldwide, there are so many feel-good stories in South Africa as well. And I’m just one person out of 1000s that can tell amazing stories. So it’s for me, it’s an honor to almost represent South Africa today,  with your program.

Heidi Johnson:  At the end of the day, people are good. And it doesn’t matter where they are on the globe, there are amazing things happening all around the world. And sharing those stories, just makes us closer and makes us realize how small our planet has become. And the fact that we’re even having this conversation is a perfect example of it.

Charity Matters: Tell us a little about what Distance For Difference does?

Stéphan Pieterse: Our main objective is really just to positively impact the lives of children in need. We do this by raising funds for children’s charities, or individuals caring for abandoned or abused children. And we basically raise these funds in two main ways. We have two sporting events,  the gratitude run and then we also have a 24-hour 301-mile cycling endurance event and we call that 500.

Then we also support individual athletes doing something challenging, like swimming across the sea, doing extreme cycling events, ultra marathons and we were even running marathons around their houses like we had to do during the lockdown in South Africa. We set up campaigns for these athletes to help them to market these fundraisers amongst their colleagues and families and friends and so on. We are very serious about the wise and very thoughtful distribution of these funds that are entrusted to us to become a beneficiary of Distance for Difference. 

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

Stéphan Pieterse:  Perhaps the earliest experience of charity was at the age of five when I lost my father in a vehicle accident. And he was only 37 years old at the time was a pastor. My mother was left with four children, the youngest was only eight months old, I was five.  I think it was during those early years that I experienced how it was to be on the receiving end of charity, and so many people really gave me hope for the future. 

My entire outlook on life, and especially doing things for others, changed dramatically during the last few weeks of 1996. We went on a three-week mission trip to India. it was really during those weeks experiencing,  both physical and spiritual sort of poverty of the people of India, that my entire outlook on material things in life really changed. I returned to South Africa, with a totally different outlook. I just had this burning desire to really reach out and help other human beings. And it didn’t all start then, it took another decade after that experience.

Charity Matters: What are your biggest challenges?

Stéphan Pieterse: One of the biggest things is at times losing hope. There’s so much corruption in this world, also in South Africa. The staggering the figures that they mentioned, in terms of how much corruption costs countries in South Africa. We talk about a figure of 68 billion US dollars. For me, that’s a staggering amount of money. When I use those figures, it sometimes takes the wind out of my sails.  I then think about Distance for Difference and our 10 years of hard work and toil and long hours.  We raised this minuscule little amount in comparison to that figure and that sometimes makes me want to cry. Then I think if we could just take 1% of that amount and distribute that to children in India and South Africa? What impact that would have been? 

Charity Matters: Do you have a favorite motto or phrase?

Stéphan Pieterse: I love the quote by Gandhi,” Be the change you want to see in his world.” You know, that became my catchphrase because there’s so much negativity, especially in our country right now. What is it that I can do to make a small difference? It doesn’t need to be starting an organization like this, just maybe joining some way. This world will be a better place.

How has this journey changed you?

Stéphan Pieterse:  This journey changed me from a self-centered individual who did things for others to feel good and to be recognized into somebody that doesn’t want recognition at all. It made me realize how blessed I am. We all have to think loud and clear about why are we being blessed?  Why are we in such a really fortunate situation?  What do we do with those blessings?

It really just changed me to have an eternal outlook and to know that life on earth is finite.  We are not going to be here forever. What are we doing with the time that we’ve been given? And are we really collecting treasures in heaven? Maybe you have one individual who’s listening right now who thinks that they want to do something? Just go out and start something small. It doesn’t have to be big. Get your family members involved. Start communicating about your desire. Get in contact with us, if you want advice.  Don’t sit and wonder anymore, go out and do and have an impact and make a change. 

CHARITY MATTERS.

 

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It just isn’t summer without camp

Monday marked the first official week of summer. This year, post-COVID, the world is ready for all the fun that summer brings and that many of us were denied last year….travel, beach, lakes, backyard barbeques, and summer camp. Over six million American children participate in some sort of day or overnight camp each year. Many of these camps are nonprofit organizations. Last year, while many children were quarantined in their homes camp did not happen for these kids. Now more than ever these children need to reconnect, have fun, and learn.

While Charity Matters is my passion, my day job is running a non-profit leadership organization, which also has a summer camp program. We have incredible high school and college students volunteering to serve as camp counselors and mentors. Many counselors are alumni of our program and want to give back to an organization that changed their lives.  Students teaching students to be the best of themselves. Showing one another respect, how to learn from different opinions, and how to work together towards a resolution. Ultimately, teaching students how to lead.

Last year, we sent camp in a box and sold out our online program. Tomorrow, I will happily be greeting hundreds of smiling faces as our 6th, 7th, and 8th graders arrive with their nervous parents. For some, it will be their first time away from home.  All of these children have been isolated in some way this year. It is such a great feeling to bring everyone together. There is no greater joy than knowing that you are part of something bigger than yourself and that your work makes a difference. This video below from one of our students a few years back, pretty much says it all.

Nothing brings greater joy than planting the seeds of compassion in these incredible students year after year.  When the world seems to get a bit crazier, these students give me hope. I can’t help believe that our children will be better than we were, they will learn, listen, come together to lead us all. These children are our hope. As one of our students said, “It is an eyeopener to learn that you can do something to change the world...”

Charity Matters.

 

 

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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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