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Winter Break

I hope that 2022 is off to a terrific start. Our incredible crew here at Charity Matters (Emma, Jack, and Ana Sofia) have worked so hard pushing out stories all last year. It seemed like a great time for all of us to take a winter break. We are taking a little hiatus to rest, regroup, and hit the reset button. We are getting so excited for Season Three of the Charity Matters Podcast that will be out later this month.

In the meantime, I encourage you to catch up on old episodes and tune back into your favorite episodes of our podcast this month! If you have any favorite nonprofits or know a nonprofit founder that you think would make a great guest for next season don’t hesitate to send us an email or DM us on Instagram. We love all of your suggestions.

Until then, know that we are excited for what’s ahead in 2022 and can’t wait to introduce you to some inspirational humans who make our world better. Hope you are as excited as we are…

Charity Matters

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

Copyright © 2022 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.

A Little Fear Come New Year

Happy New Years everyone! I hope you had the best of holidays and are off to a great 2022. I’ve been thinking a lot these past few days about the New Year. I am historically someone who can’t wait to make my list of resolutions, excited by a blank piece of paper, goals, and a list. Type A all the way. Sad but true.

However, this year I don’t feel that way and it’s been perplexing. Why would I not get excited and hopeful about a new year and a chance to start anew? Honestly, I think the answer is that I am afraid. Afraid of having hopes, wishes, and dreams squashed. If you don’t dream them then they can’t be taken away, right? If you don’t write them down then maybe you don’t have to work so hard trying to achieve them. These past two years have definitely taken their toll in that department.

In late November of 2019, I was on the cusp of achieving something I had dreamed of for a decade. It was a pinch-me sort of moment and in an instant, something totally out of my control, temporarily suspended the dream. That was tough but still okay because 2020 was coming and we were going to relaunch this dream in March of 2020. Well, we all know how that went. I think for many of us big dreamers 2020 was a time for us to really throw ourselves all out. We were so sure that the new decade and year was going to be our year, THE one.

Last year, I admit I was a little gun shy in the New Years’ resolutions department. My attitude was a bit like control what you can control and let the rest go. I did that. We launched the Charity Matters Podcast, which was great. However, last year felt like a transition year. A transition from what to what remains to be seen but that is how it felt.

Now, here I am again with the blank piece of paper in front of me and 360 some odd days in this New Year and I am gun shy. Nervous, tentative, and a little scared. That is life, it is scary and not being in control for us control freaks is the scariest. If I learned anything from the last two years it is that I am not in control of anything but my decisions. As a result, I am deciding to face my fears and jump back into the ring in 2022.

This year, I am going to pursue my dream yet again. I am going to sit down and see what goals I can achieve, strive for, and work to make happen. I will do my best, celebrate the small steps forward and most importantly enjoy the journey of it all. At the end of the day, our resolutions are not about a list but they are a road map for the lives we want. If we don’t write down those maps then it is much harder to know the direction of our dreams.

Afraid or not, 2022 I’m coming for you. Hopes, wishes, and dreams. I hope that each of you is envisioning a joyous and magical New Year filled with everything you wish for. Happy happy New Year!

Charity Matters

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

Copyright © 2022 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

The Real Heroes of 2021

As we get ready to say goodbye to 2021, I wanted to take a moment to look back at what we accomplished at Charity Matters this year. Last January we launched our podcast, which in itself was a huge accomplishment.  In the past year, we have interviewed 31 extraordinary humans. Each story was a lesson in faith, resilience, courage, and compassion. These amazing nonprofit founders are the real heroes of our world in their quest to make life better for others.

While I have adored every conversation this past year, a few stood out especially from Season Two. I thought before we take our holiday break to get ready for Season Three we would take a moment to share a few stories that really touched our hearts this year. So let’s look back at some of the real heroes of 2021….

Love Not Lost Founder: Ashley Jones

Ashley Jones is 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. Her honesty and candor about grief are anything but sad.  You will leave this episode inspired by the joy and purpose found from an unbelievable loss.

The Bumble Bee Foundation Founder: Heather DonaTini

Heather Donatini, aka Queen Bee of the BumbleBee Foundation. Heather and her husband Jason, established the Bumblebee Foundation in 2011 in memory of their son Jarren who was diagnosed with rare liver cancer at the age of three. Their mission is to inspire hope, faith, and the overall well-being of pediatric cancer families.  Heather and her husband work tirelessly to serve pediatric cancer families. She is a lesson in resiliency and faith. She is truly remarkable and the work they do is just as inspirational.

The Be Perfect Foundation Founder: Hal Hargrave Jr. 

I have been privileged to meet hundreds of truly amazing humans over the years. 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. 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.

Pancreatic Cancer Action Network President and CEO: Julie Fleshman

I have to admit I was a little intimidated meeting Julie Fleshman knowing what a huge organization she and her team had built.  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 to meet this inspirational leader and learn about her incredible journey in changing lives.

Raise The Barr Foundation Co-Founder: Lori Barr

Lori Barr is no stranger to inspirational seasons because much of her life has been based around her now-famous son’s inspirational football seasons. Lori is the proud mother of NFL Minnesota Viking’s outside linebacker, Anthony Barr. However, it is much more than his football career that makes her proud, it is Anthony’s work to serve others with their nonprofit, Raise The Barr that is truly inspiring. Lori Barr talks about her journey as a single mother to nonprofit founder and shares her story of raising Anthony as a young single mother.  Learn how they decided to give back to help other single moms finish their education and support their families. Lori is pure sunshine and inspiration. This is a conversation you don’t want to miss.

There are millions of everyday heroes all around us. These five are just a small example of the millions who work in the nonprofit space and give their lives to serving and helping others. Each person is a reminder for us all that we get so much more when we give. As we look back at 2021 and reflect on what we accomplished at Charity Matters, we find ourselves asking what more can we do for our neighbors and communities in 2022? Thank you all for being a part of this wonderful community of caring compassionate people. We are so grateful for you all and wish you a most joyous New Year!

 

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

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

Episode 31: Raise The Barr

As we wrap up Season Two of our podcast, I can think of no greater guest than todays to conclude this inspirational season. Lori Barr is no stranger to inspirational seasons because much of her life has been based around her now-famous son’s inspirational football seasons. Lori is the proud mother of NFL Minnesota Viking’s outside linebacker, Anthony Barr. However, it is much more than his football career that makes her proud, it is Anthony’s work to serve others with their nonprofit, Raise The Barr that is truly inspiring.

Photo cred- Janae Johnson photography

Join us today for an incredible conversation with Lori Barr about her journey as a single mother to nonprofit founder. Lori shares her story of raising Anthony as a young mother and how they decided to give back to help other single moms finish their education and support their families. She is pure sunshine and inspiration, it is a conversation you don’t want to miss.

 

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Raise The Barr does?

Lori Barr:  Raise The Barr’s mission is to increase opportunity and economic mobility for single parents, students, and their children through education. What that looks like, is providing holistic resources and support to low-income single parents, students who are in pursuit of a post-secondary degree training certification. The end goal of securing a career that offers a family-sustaining wage. We know that education is one pathway out of poverty. So that’s the road that we’ve taken because it was inspired by our own experiences.

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

Lori Barr:  It’s kind of a combination of a whole lot of things and an intersection of all these life experiences that brought us to this point. Growing up Catholic, we were always taught very, very early on that when the basket passed that we put a little something from our own piggy bank into the collection plate. As a result, that very early experience of helping your neighbor and paying attention to the experiences of others.

Then all this stuff happens through life and I end up getting pregnant at the age of 19.  I was going into my junior year at St. Mary’s College in South Bend, Indiana. So, I kind of had to reprioritize my life and figure out how I was going to take care of myself and my small child. Those experiences kind of fueled the vision for Raise The Barr. 

In 2014, when Anthony was drafted in the top 10 of the NFL Draft, we held a youth football camp.  It was free and for the local community to get to meet Anthony.  He was kind of a local star and he wanted to bring all these people together. It was an amazing day, we had over 300 Kids, 150 volunteers, and all of these people coming together. After that experience, he and I sat down and said, “Wouldn’t it be cool if we could harness this energy, and this enthusiasm, with your platform to really do something big and have a big impact on families like ours?” That’s where Raise the Barr was born.

It really started from our own stories and experiences. What we originally thought was let’s just start a scholarship fund for single moms like me, who are trying to do something to support their family but they may need a little support. We thought that support looked like a scholarship. Although that is still part of our overall programming, that isn’t even the tip of the iceberg of what single parents need in order to persist through post-secondary, it’s just one part of it.

Charity Matters: What are your biggest challenges?

Lori Barr: Right, it is hard work. I think that recognizing what your limitations are, is humbling.  It puts you in a place to realize that we need to kind of stay in our lane. For us, it was recognizing that one of our biggest challenges was diverse revenue sources.  Our biggest funder could not be Anthony.  We needed to be sustainable and we really had to dig to create diverse revenue streams.

Our second biggest challenge would be brand awareness. It really is about folks learning about you and coming up with a plan of how you’re going to market your product. In order for people to get engaged, you have to start with building a relationship and building trust. That’s brand awareness, trusting who we are. When you see our logo, when you hear tackling poverty, we want you to think about Raise the Barr.

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

Lori Barr: The families we serve, the relationships that we’ve built, and the belief in our mission. Also,  knowing that this works and that we are having an impact.  Seeing the results of our early work, that’s what keeps us going. That’s what when I’m lying awake at night thinking, oh my God, I need to do blah, blah, blah, and I remember why we’re here. It is one step at a time. And, you know, we’re doing good work and we keep that in mind every step of the way.

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

Lori Barr: 99% of our scholars have earned a degree or graduated.  When we talk about increasing economic mobility, the annual income on average of an applicant, when they come into the Raise The Barr family is about $15,000 annually. Upon leaving and securing a career, the average income is $64,000 a year. So there’s a huge increase, and they can now support themselves and their family moving towards true prosperity.

For us, it’s totally about the stories and where they are now.  A real quick story of Tanya. She is a Native American single mom who grew up in poverty. Father in prison,  a mother struggling to make ends meat and college was not in her plan.  She became a mom at a young age. And, like me, she decided she better get into school and figure something out. She went through community college and ended up transferring to a university. Today, she is now being invited by the American Indian Science and Engineers Council to speak and present at their conference. She is a chemist and will graduate this December. Her son is a fourth-grader, he’s achieving above grade level, three grades above with reading and math. Those are our success stories. That’s the impact that we’re having.

There are so many more stories like Tanya that we have and that we really celebrate because these are lives that are changed. That we can be a little part of that change, and create hope and opportunity to me, that’s a huge success.

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

Lori Barr:  I think mine would be so similar to so many other small nonprofits out there. The dream is that we have all the resources that we need to do the work that we do. Our dream would look like us being able to really provide the resources needed to single parents, students everywhere, so they could succeed.  That might look like something practical, like an endowed scholarship, that also might look like having strong partnerships with post-secondary partners.  There are little things like that, which I think would help us continue this work, and really have an impact and really start to crack generational poverty.

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

Lori Barr:  I’m a teacher at heart, that’s what I was trained to do, and I went on to pursue a master’s degree in counseling and psychology.  So, I would say that I think I’m a pretty good listener. This has taught me to listen more, and talk less. And it’s taught me to really be more thoughtful about how I approach my own life. I think about the experiences of others. Somebody else’s experience is just as valuable, if not more than our own, and so listening, thinking, and letting that help our decision-making. 

As a sports mom,  I always use a sports analogy but really learned to focus on how to build a championship team.  Bringing the right people on board,  all with different skill sets. As a single parent, so often I carry the burden completely on my own, and decision-making all by myself.  It was not really, within my experience for 29 years to say, I need to bring others into this to really help us have a great impact. And that’s changed for me.

I’m just happy for folks to inquire and to share what we’re doing.  A big part of increasing our impact is raising that awareness and really building that championship team.

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.

A Season of Giving

 

“Remember that the happiest people are not those getting more, but those giving more.”

H. Jackson Brown Jr.

Yesterday was Giving Tuesday which means officially that the season of giving is upon us, a time of year when we feel kindred spirits towards our fellow man.  City streets are decorated and the clanging of the Salvation Army bell fills us with joy as we drop a few dollars in the shiny red bucket. For about forty days a year, we are called upon to be charitable. Why is giving only expected just once a year? More than that, how can we incorporate a little holiday season throughout our entire year?

Why We Give

We give gifts to those we love throughout the holidays for a number of reasons. First, we want to show those that we love by giving them something that will make them happy. Another reason we give gifts is to acknowledge our appreciation to someone such as a business associate,  a neighbor, the dry cleaner, or anyone who makes your life better. When we give these gifts it is typically the gift giver that receives the most joy in the giving. Charity is no different. It is the giver of a gift that feels the resounding joy and goodwill from making another’s life better.

Where to begin?

For many of us, we want to help but often don’t know where to begin. While dropping a few dollars in a red bucket at the holidays is nice it is not a long-term solution to incorporating charity into your life. Like any lifestyle change, it takes a few things to begin. First and foremost, is your goal or intention. What do you hope to accomplish? Do you want to find a like-minded group of people to volunteer with? Perhaps something has happened recently in your life and you would like to find a way to help an organization that helped someone you care about.  Maybe you have been the recipient of someone’s kindness and would like to pay it forward. Or perhaps you are trying to be an example for your children. Think about what you would like to accomplish. There is no wrong answer.

The next step is to identify a cause or nonprofit organization. With 1.5 million charitable organizations in the United States alone, it can be overwhelming. First, find the area of interest, is it education, health, military? Fortunately, there is an abundance of online resources.  For volunteering, there are great sites like VolunteerMatch.org or CatchAFire.org that match you with nonprofits based on your interest and location. PointsofLight.org offers a variety of online or virtual volunteering opportunities.

Make giving part of daily life

For people looking to incorporate giving more into a habit, there is a host of apps for your phone. The app Daffy helps you make giving a habit by setting up daily, weekly, or monthly giving goals and delivers the funds to your cause of choice. Other options are incorporating apps like Roundup App that round up your change and donate it to your favorite cause on purchases you make throughout the year. There is even an app that helps you shop finding sustainable products and brands called the Good Human App.

Here are a few tips to remember as we approach the season of giving:

  1. Set a goal or intention for what you want to achieve. Volunteering, giving back, raising philanthropic children
  2. Find an area of interest. Think about what is important to you? Health, education, military?
  3. Do your homework. Utilize online resources and apps to find ways to incorporate giving into your daily life.
  4.   Make giving habitual by being consistent. Whether it’s a holiday tradition, something you do at birthdays, or every day, be consistent. Establish giving as a tradition and habit. The more you participate the easier and more fun it becomes.
  5.  Emphasize the joy and the experience of giving rather than money. Philanthropy is about being a part of something bigger than yourself. Make it a joyful experience and something that makes you feel great.

This holiday season; enjoy the process of giving in whatever ways you decide to participate. Ultimately, we get so much more when we give. With a few simple changes, you can experience the season of giving all year long.

CHARITY MATTERS.

 

 

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

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

Thankful this Thanksgiving

Today is the day that we take time to be thankful. This year, this day and this moment I am grateful for many things, my guess is for many of the same things you are;  health, family, friends and for all the amazing nonprofit founders who continue to inspire and teach so many invaluable life lessons.

This year has been a challenging one for me personally with more loss than I was prepared for. Yet, every time
I have a conversation with one of these inspiring founders its as if someone hit a reset button for me that leads me to gratitude. Each founder has sacrificed their life to make others lives better. Every one them remind us all what really matters and just how much we have to be grateful for each and every day.

So  today, I am grateful to each person who has come into my life and for all of the lessons they have taught.  Most of all, I am grateful to each of you who continue to inspire, teach and motivate on this journey. To each and all of you, I wish you and your families a very joyous and Happy Thanksgiving!

 

Charity Matters

 

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

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

Bisous for Léo

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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

Episode 28: Pancreatic Cancer Action Network (PanCAN)

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

Charity Matters: What Have been your biggest challenges?

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

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

Julie with Patrick Swayze’s widow, Lisa Swayze

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

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

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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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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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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Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Episode 25: The BumbleBee Foundation

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

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

Here are a few highlights from our conversation:

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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.

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

Episode 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.

 

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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.