Category

Health

Category

Episode 66: You, Me and Neurodiversity

The power of inspiration and motivation can come at any age and anytime in life. Today’s guest is an old soul doing remarkable work for the Autism community. Inspired by her younger brother, Alyssa Lego set out at age 14 to help him by creating lesson plans. Before long that work turned into creating her first nonprofit.

Today, Alyssa is joining us to share about her latest work with Autism and her new project called You, Me, Neurodiverstiy. Join us as Alyssa shares her inspiring journey from big sister, college student and nonprofit founder.

 

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what You, Me, NeuroDiversity does?

Alyssa Lego: Our mission is to embrace neurodiversity and autism acceptance in ways that really haven’t been done before. I am such a firm believer that education creates change. And I’m such a firm believer in the fact that that starts with our youngest generations. 

So when I was 14, I actually started a lesson plan program with a fourth grade teacher of mine, it was called Friends Who are Different and it was in all the school districts in my area. And it was all about autism acceptance and inclusion. But a lot of things have changed since then. You, Me Neurodiversity has really brought me back to creating content, visiting classrooms. And again, starting with that sentiment of motivating our younger generations to accept autism, embrace neurodiversity, and really become catalysts of change. So the human neurodiversity movement donates 100% of our proceeds to autism focus charities, with each book purchase, each purchase that somebody makes is making a difference. 

Charity Matters: What was the moment you knew you needed to act and start Your Organization?

Alyssa Lego: This really all began from my relationship with my younger brother.  I learned pretty early on that the world just was not designed for autistic people. We have a long ways to go in terms of true autism acceptance, rather than just awareness. And there were so many moments that just broke my heart as a young girl. I remember instances of sheer bullying because my brother couldn’t communicate. He communicated in a different way just because his brain was wired a certain way. He was discriminated against in school and in the community.

As that older sister, I wanted to do whatever I could to make the world a better place for my brother and people that were experiencing the world in a similar way to my brother. And for me, I love to write and I love to speak. So that’s how the lesson plan program started all those years ago.

Charity Matters: what or who influenced you to start giving back at such an early age?

Alyssa Lego: I was raised in a home that really embraced volunteerism and giving back to your community. My earliest introduction to volunteerism was with the Special Olympics.  I volunteered as an ambassador with the Special Olympics from I think the time I was nine years old  until I was maybe about 14. So I would fundraise for the organization and I got the chance to attend events. 

The Special Olympics was the first time where I actually delivered a motivational speech. I was 12, at one of the Special Olympics events, and I remember just thinking to myself, this is a space where I can use that force for good.  I believe that is really where it all started. I remember I hosted, with a lot of help from my parents, an ice cream social to benefit the Special Olympics when I was in the fifth grade. Everybody came out my whole school came out all my teachers.  But I think even at that young age, I realized wow, I am part of something so much bigger than myself. Then as I got older, I started to realize that I really want to see what these proceeds and what these funds are doing. That’s what led me to create things like You, Me and Neurodiversity. I could really see where that money was going, and feel that impact and continue making those connections firsthand.

Charity Matters: What are your biggest challenges?

Alyssa Lego: I think I’ve really seen ageism in action a lot. Being 14, my mom was in the back because I was a minor, pitching to the Board of Education for why they should put my lesson plan in schools at that young age. So I really, I have seen a lot of ageism, and people just just not understanding that young people can be the change. Young people can start great things and be a part of great things. And unfortunately, I think that’s something that deters a lot of young people away from volunteerism or starting their own organization. They think that’s for people who already have established careers or who already have X amount of years doing certain things.

I think another challenge that I still face day to day is just time management. Being a full-time college student, the creator of You, Me, Neurodiversity,  being involved in school,  reserving time for family and friends and of course taking care of myself it’s definitely not easy.  By being disciplined with myself, and taking care of myself allows me to kind of fill all of those buckets.  I’ve really learned the importance of teamwork and communication. Time management is a skill that I’m continuing to develop as I get older. It’s just been such an incredible journey and I’m so grateful for all of the people that have really helped me get to this point and inspire me to continue on.

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

Alyssa Lego: My brother, it just goes back to the initial inspiration.  I actually just became one of my brother’s legal guardians because he just turned 18 years old. That is one thing that certainly keeps me up at night but also continues to inspire and motivate me.  Just the prospect and the idea of my brother, being able to live a thriving, a fulfilling life in a community that supports him is what inspires me. This is what motivates me to write that social media post when I don’t really feel like doing it, or change the dimensions of the book for the 7,000,000th time.

I think that’s the most magical thing about founders and about the nonprofit space because everybody has that story. Everybody has that. It’s almost like a duality between the vision, and what makes you tick. Seeing the present, seeing the past, but then knowing what the future can be and knowing that you’re a part of that. Knowing that you’re writing that story,  in my case, literally writing that story is just incredibly inspiring. And then of course, knowing that I don’t walk alone is another thing that really inspires me as well.

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

Alyssa Lego: I would love to turn You Me Neurodiversity into a household  name for reading about autism acceptance. I really would love to continue developing our interactive activity books and  just taking all of these great experiences that kids have in the classroom and making them inclusive.  I really do believe that we could do that with our books and programs. And I’m hoping to partner with more schools, speak with the children and really have them understand what it means to be an ambassador of acceptance. Then one day pass the torch on in the hopes of creating a more inclusive world.

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

Alyssa Lego: I think listening as much as you speak is one of the greatest lessons that I’ve learned.  I think I’ve really learned the great power of teamwork and of listening as a tool for leadership.  It’s really not about having the loudest voice in the room, but making sure that everybody else in the room feels like they have a stake in the conversation and feels like they’re being heard.

 I think another great lesson that I’ve learned is listening to the communities that you serve. I am  big on self advocacy, and amplifying autistic voices. It’s in itself, it’s such a powerful tool. That is one piece of advice that I would give to any founder. Really listen to the communities you serve to understand those nuances. Because if you’re in a space where you can really affect change, you want to make sure you’re going you’re using your passion for a purpose. One of the most important things that really guides everything I do is listening to the communities that I’m serving.

CHARITY MATTERS.

 

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

Copyright © 2023 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 60: Dana Pepper Bouton Endowment Fund

Years ago when I lost my mom, someone said to me, “The greatest gift you can give the world is a life well lived.” Today’s guest is a fantastic example of just that.  In full disclosure, I have known our guest Dana Bouton for probably twenty years. We have raised our children in the same community. A few weeks ago, Dana sent me an email explaining that her cancer had returned and was now terminal. She was determined to use the time she had left to leave a lifetime legacy to the City of Hope. The Dana Pepper Bouton Endowment Fund will help families financially devastated by cancer.

Join Dana and June Penrod from City of Hope to learn how one person can make a difference for so many living with cancer. Dana’s humor and insight will inspire you and make you think about how you live. She is a true example of the quote above and what really matters.

 

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Dana Pepper Bouton Endowment Fund will do?

Dana Pepper Bouton: The idea of the fund was set up to help families who are navigating the difficult diagnosis of cancer to have resources for support.  They want world class care to hospital and need to get transportation, gas,  child care, groceries, and a multitude of other things. So this fund is set up to kick out money in the form of gift cards, to help these families get to City of Hope. More than having the best possible care but receiving some supportive care on the side of having to deal with their loved one being a patient. 

June Penrod: What we do is provide state of the art treatment.  So we are really the champion when it comes to precision medicine of being able to fight cancer.  Not only at the cusp of when it’s worst in your body, but also in the beginning phases of helping our population screening for cancer. So we really did the entire gamut from A to Z on cancer treatment for for all patients in Los Angeles and Orange County.

We are really proud of the impact that we are having on cancer patients in the nation. The the role that I specifically play is acquiring resources for what we call our Department of Supportive Care Medicine. It is one of the unique elements ofCity of Hope that make it so special. Supportive Care is basically the emotional and spiritual arm that comes out of the cancer journey that patients go through. So while they can focus on the treatment with their doctors, Supportive Care medicine wants to focus on their emotional care journey.  Then they are really focused on their cancer treatment and not having to worry about any of the external factors that might get in the way of that journey.

Charity Matters: What was the moment you knew you needed to act and start this endowment?

Dana Pepper Bouton:  I was diagnosed with stage four non Hodgkins lymphoma in January of 2018. And here we are about what five and a half years later.  I’ve had multiple rounds of chemotherapy, back to back bone marrow transplants, a few operations, infusions, and transfusions. Now I’m terminal after all of those treatments.  You know, I can’t can’t control the fact the doctors say, “there’s nothing more we can do for you, except try to keep you alive a few months at a time.” 

So I’ve lost the ability to kind of control how long I thought I would live. I came to the conclusion that I haven’t lost the ability to create a legacy for other people. Even though I’ve had basically what I simply call very bad luck because there’s no genetic component to how sick I’ve been. I’ve also been very blessed. And I’ve had multiple resources, in terms of financial supportive community to help me along the way. 

After spending so much time in the hospital, and listening to June and others talk about the supportive care that City of Hope offers. I can create a legacy after I’m gone to help hundreds of people and that makes me feel really good. In fact, being terminal is really not that big of a deal in terms of how many people I can impact during the few months, maybe six months a year that I have left. This brings me such great joy and working with June and seeing her enthusiasm and the people around me who want to give. I just want to work as hard as I can to reach out to as many more people as possible. And I do have a tendency to to accost people in the market.

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

Dana Pepper Bouton: I would say number one, I’ve had incredible support at City of Hope. And I also think, knowing that I have very limited time left, I see and feel and touch and smell in here so acutely. But I’m just really inspired by my enhanced senses. And so I love to capture what’s around me from macro to landscape, and put that on my website and share that in form of wall art or greeting cards, postcards, and sell them, and how those proceeds go to my fund. 

 I’ve laid in bed for sure, and had had some really hard days. But seeing, feeling, talking to people and really hearing and really listening just propels me to keep going.  I know that when I am dying, I’m not going to regret being so tired. While taking pictures, or being with people, I would only regret that maybe I just stayed in bed and felt sorry for myself.  After I die, I want my fund to continue. So I’m pushing to get the word out.

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

June Penrod:  Dana is a great example.  I think she doesn’t mind being the dramatic story of philanthropy, of this woman who should be taking care of herself but instead she’s taking care of others. Even though she received a terminal diagnosis, I mean, look at what she’s doing now.  We have folks who say, we have a great life that we’re living now, thanks to City of Hope and we want to contribute more. 

But we do also have the folks who say, “My loved ones not here with me anymore, but I love the compassion and the care they received.”  And so we want to give.  Then there are folks who have never stepped foot into the hospital but they know the great work that we do. And they want us to be their charity of choice. That blows my mind as well. 

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

Dana Pepper Bouton:  My dream is that after I die, I want to this fund to continue in perpetuity. So my dream is to keep spreading the word as long as long as possible. Then have my family and other people give money once or twice a year, in perpetuity.

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

Dana Pepper Bouton:  I appreciate when people talk to me out of just accepting where I’m at, and not trying to tell me that I don’t have hope. I have hope. And I also know that I’m going to die. Maybe within a few months, or perhaps, you know, a year. I think that’s the biggest life lesson is listen to people in terms of where they’re at in their head. And don’t try to talk them out of something that might be their actual reality. I know that people have their own fear, but set that aside and try to put yourself in somebody else’s place.

Charity Matters: How has this journey changed you?

Dana Pepper Bouton: There are two big changes. One is I had the arrogance of aging, I thought I would live as long as my grandmother, who lived almost to the age of 102.  I assumed it would be just like that. And that was very arrogant on my part. I’ve learned in the last six years or little over five years, I guess, that that that was just very presumptuous of me. And I’m quite humbled and I find that now to be a blessing. And I also think it’s funny. 

I think my sense of humor has gotten quite rivaled.  The other thing is that I’ve had had to learn to slow down and not be busy, which I really liked. But I’ve I’ve accepted the fact that I can slow down. If I’m in pain, it’s okay to lay back down and listen to podcasts like your podcasts, and audiobooks and dream. My imagination has become so acute because I’ve been forced to lay down, forced to take a break. I willed myself to pivot and it took a while. And I’m proud that I had the strength although it took a long time to finally accept, don’t find it pivot. Find those blessings, and there’s new magic.

 

CHARITY MATTERS.

 

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

Copyright © 2023 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.

 

 

Charity Matters: Tell us a little about what The Dana Pepper Bouton Endowment Fund will do?

Dana Pepper Bouton: The idea of the fund was set up to help families who are navigating the difficult diagnosis of cancer to have resources for support.  They want world class care to hospital and need to get transportation, gas,  child care, groceries, and a multitude of other things. So this fund is set up to kick out money in the form of gift cards, to help these families get to City of Hope. More than having the best possible care but receiving some supportive care on the side of having to deal with their loved one being a patient. 

June Penrod: What we do is provide state of the art treatment.  So we are really the champion when it comes to precision medicine of being able to fight cancer.  Not only at the cusp of when it’s worst in your body, but also in the beginning phases of helping our population screening for cancer. So we really did the entire gamut from A to Z on cancer treatment for for all patients in Los Angeles and Orange County.

We are really proud of the impact that we are having on cancer patients in the nation. The the role that I specifically play is acquiring resources for what we call our Department of Supportive Care Medicine. It is one of the unique elements of City of Hope that make it so special. Supportive Care is basically the emotional and spiritual arm that comes out of the cancer journey that patients go through. So while they can focus on the treatment with their doctors, Supportive Care medicine wants to focus on their emotional care journey.  Then they are really focused on their cancer treatment and not having to worry about any of the external factors that might get in the way of that journey.

Charity Matters: What was the moment you knew you needed to act and start this endowment?

Dana Pepper Bouton:  I was diagnosed with stage four non Hodgkins lymphoma in January of 2018. And here we are about what five and a half years later.  I’ve had multiple rounds of chemotherapy, back to back bone marrow transplants, a few operations, infusions, and transfusions. Now I’m terminal after all of those treatments.  You know, I can’t can’t control the fact the doctors say, “there’s nothing more we can do for you, except try to keep you alive a few months at a time.”

So I’ve lost the ability to kind of control how long I thought I would live. I came to the conclusion that I haven’t lost the ability to create a legacy for other people. Even though I’ve had basically what I simply call very bad luck because there’s no genetic component to how sick I’ve been. I’ve also been very blessed. And I’ve had multiple resources, in terms of financial supportive community to help me along the way.

After spending so much time in the hospital, and listening to June and others talk about the supportive care that City of Hope offers. I can create a legacy after I’m gone to help hundreds of people and that makes me feel really good. In fact, being terminal is really not that big of a deal in terms of how many people I can impact during the few months, maybe six months a year that I have left. This brings me such great joy and working with June and seeing her enthusiasm and the people around me who want to give. I just want to work as hard as I can to reach out to as many more people as possible. And I do have a tendency to to accost people in the market.

June Penrod:

 

 

Charity Matters: What are your biggest challenges?

Dana Pepper Bouton:

June Penrod:

 

 

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

Dana Pepper Bouton:

June Penrod:

 

 

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

Dana Pepper Bouton:

June Penrod:

 

 

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

Dana Pepper Bouton:

June Penrod:

 

 

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

Dana Pepper Bouton:

June Penrod:

 

 

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

Dana Pepper Bouton:

June Penrod:

 

Charity Matters: How has this journey changed you?

Dana Pepper Bouton:

June Penrod:

 

CHARITY MATTERS.

 

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

Copyright © 2023 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 55: Grass Roots Grocery

If you have been to the grocery store recently you know how insane food prices are these days. When eggs are $8.99 something isn’t right! When one New York school teacher realized that his students were going without food he decided to step up in a very big way. It turns out that 1 in 4 New Yorkers who are experiencing a food emergency can even access a food pantry.

Join us today to hear the inspirational conversation of one man’s journey from the classroom to major food distribution to serve thousands of meals to his neighborhood. Dan Zauderer is an inspiration for us all in his mission to get all of us to be neighbors helping neighbors.

 

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Grass Roots Grocery does?

Dan Zauderer:  Our mission statement is to advance food justice by cultivating a community of neighbors helping neighbors. What that means in action, is it means neighbors coming together, in grassroots service.  Making sure that their fellow neighbors have enough food to eat.

There are two different programs that we do that do but it’s really just founded upon the notion that we all need to come together to to take a bite out of food insecurity. This is not something that big food pantries can do alone. It’s not something that we can just leave up to the policymakers. The  problem is so big, that the only way to really shift it is for everybody to be involved.

Whether it’s by people roping in their corporate workplace, reaching out to their local girl scout troops, taking a couple of hours out of their week  to help make sure that their neighbors are nourished and fed. That’s what this is about. It’s kind of a narrative shift focusing on on bottom up direct action from the people. it’s just basically about operationalizing this notion of neighbors helping neighbors and applying it specifically to the realm of food justice.

Charity Matters: What was the moment you knew you needed to act and start Grass Roots Grocery?

Dan Zauderer:  It kind of begins with me having a career in the startup world, doing sales in New York.  So I set off into the startup world and I loved the element that involves working with people but I just hated the things that I was selling. I decided that I was going to stop everything, move out to Costa Rica, take a life break and teach English. I fell in love with teaching.

So I went back to Columbia University to get my Master’s in teaching English to Speakers of Other Languages. I started working at a school called the American Dream School, in the South Bronx. The student  population is the children of mostly undocumented Central American and Mexican immigrants.  One day, I am walking home and I see one of my students on the sidewalk. Next to my students, I see that there’s this elderly woman who’s digging through trash can dumpster diving.

So, I reached out to my student the next day and I asked him to share about what I saw. He told me that the woman was his grandmother and then this was something  that was a normal activity. When Covid hit, I thought  how can I rally my family and friends around something that would be helpful to my student community?  I decided that we should just raise a bunch of money because I knew it wasn’t just this one student and there were other families who had to deal with food insecurity. We then found out that one out of every four families were cutting down on meals a few times every week in my school community.

Then I learned about community refrigerators, the idea is literally a fridge on the sidewalk put down by an organizer. You place a refrigerator into a local store and you get people to donate food that have extra. Then we rallied together staff, my own family and friends and said, “Alright, let’s start a community fridge in Mott Haven”. That’s the way that this was started  as a teacher’s passion project that ultimately was renamed Grass Roots Grocery.

Charity Matters: What are your biggest challenges?

Dan Zauderer: Funding is was a huge challenge.

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

Dan Zauderer:  A couple of things, one is my amazing girlfriend, my mom, my dad and family.  Having great people in my life is one thing. Another is the amazing community of volunteers. We’ve recruited over almost 3000 volunteers to help out  with this work and they light me up.  Whether it’s little kids, or high schoolers engaging in some kind of direct action to support their neighbors with food justice.

Every Saturday, we have what I call it produce party.  Where we come together with over 100 volunteers in a parking lot in the South Bronx. We unload a truck filled with excess surplus produce that we’ve picked up from the Hunts Point produce market, which is the biggest produce market in the country. Then every Saturday, we work together as volunteers to unload that truck and  to sort through all the food. After that, we load it up into the vehicles of our volunteer drivers. The drivers who come and bring it to our network of community liaisons.  

This past Saturday, I think we had 36 volunteer drivers. Wow. Over 100 people I want to say, and we delivered to I think it was 32 or 34. communities. So far, with not everybody reporting their numbers, we reached over 1000 families in that one Saturday. And I mean, that fuels me.

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

Dan Zauderer:  For example, all of our volunteers that came out this past Saturday, they got an email saying that you moved about 10,000 pounds of excess produce to 34 different communities throughout Harlem, the Bronx, and reached over 1000 families through community leader liaisons. Those liaisons  gave out that food to their neighbors in need in the way that they thought best. So that’s something that every volunteer received. That happens every weekend. 

 This crew of community leaders, I call them grassroots grocers and they all have stories of their own. They’re all doing this work for free because they’re leaders in their community. They want to give food to their people in need and so they’re volunteers.

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

Dan Zauderer: The real dream is to end food insecurity. But that’s not going to be in my lifetime,  although it would be amazing. My dream is for this mindset of neighbors helping neighbors to promote food justice becomes ingrained into the the habit of people’s lives. And it’s already happening. We have families that are that are making sandwiches or that are taking leftover meals and putting them into Tupperware containers and filling the community fridges. People  taking time out of their Saturday once a month to join us in a produce party.

If it just became commonplace, right? It’s this idea that we all need to come together. We can’t just rely on these big food rescue trucks, big nonprofits and the policymakers.  It’s up to all of us, even if it’s just a couple hours a month. That’s really my dream is for that mentality to just wash over the world. 

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

Dan Zauderer: The life lesson that I learned and that is just so important is to have meaning in the work that I do.  It’s really important for me to do something that this that that feels meaningful.  I’ve been sober for 12 years, and you know, starting a nonprofit is even harder than getting sober. 

I’m just so lucky that I created that this amazing community of neighbors helping neighbors. The fact that I can do this work and light people up and get people’s kids involved and spread this message. It is just what fills my cup. Centering on meaning and finding a way to remember all of the blessings of the work that you’re doing is what it’s all about.

CHARITY MATTERS.

 

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

Copyright © 2023 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.

Pablove

The world is full of amazing and inspiring humans, they are all around us. When you have a moment to learn someone’s life story, it is a privilege to share it.  Since February 4th was World Cancer Day I thought we would take a look back at the fantastic conversation with Jo Ann Thrailkill, the founder of Pablove.org. Jo Ann founded Pablove to honor her son Pablo and to invest in underfunded cutting edge pediatric cancer research and improve the lives of children living with cancer through the arts.  I know she will warm your heart  and inspire you as much as she did me.

Here are some highlights from  our conversation:

Charity Matters: What was your background before starting Pablove?

JoAnn Thrailkill: In my 20s through my 40s I was a music video producer. I absolutely loved my job and was living a dream. I was a single mother with a fantastic life and career. When I met my husband Jeff, who is also in the music business, and we had our son Pablo, I decided to slow my career down a bit and focus on my family and time with my two sons.

When Pablo was diagnosed with a rare pediatric cancer in May of 2008 everything changed. I went from producing music videos to trying to Executive Produce Pablo’s treatment and care. While Pablo was sick we had so many people who wanted to help, bring food, do something. A co-worker of my husbands, started a PayPal account just so people could do something. We were so involved with Pablo we weren’t really aware of how many people were supporting us through this. 

Charity Matters: When did you realize you were going to start a nonprofit?

Jo Ann ThrailkillWhen Pablo died six days after his 6th birthday we were devastated,bereft and overcome by grief. We were also overcome by people’s kindness and generosity. People really wanted to help us in so many ways, it was overwhelming. When we went to gather pictures for his memorial service, we found so many photos that Pablo had taken with all of our devices. They were everywhere and we had no idea he was such a photographer.

A few months after his death, my husband decided to ride his bike across the country, to deal with his grief and process all that had happened. When he came back, his co-worker asked, “What do you want to do with this PayPal account and the funds?” To be honest we had forgotten about the account and didn’t think it could have had more than a couple thousand dollars. To our total surprise there was over $250,000 and in that moment we felt an overwhelming responsibility to all of these people who had supported us and Pablo.

When my husband said, “You need to executive produce this,” meaning the beginning of Pablove.org, that was the moment.

Charity Matters: Where did you start?

Jo Ann Thrailkill: I went to see Pablo’s doctor, to get a direction and he asked me, ” What would you have wanted that you didn’t have when Pablo was sick?” And my answer was a cure. So I knew we were going to need to invest in research since pediatric cancer research is so underfunded, only 4% of cancer research funding goes towards childhood cancer.

He then asked me what Pablo would have wanted and I knew it was something in the arts and Pablo loved photography. I knew that Pablo just wanted to feel like a kid when he was sick and that his photography had been a form of self-expression. So that is how we began the Shutterbugs program which teaches children and teens with cancer the art of photography.

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

Jo Ann Thrailkill: When the kids tell us that working with a camera and photography has been a life changing experience for them. That is when you don’t want to stop and know you need to keep going. In addition, to know that we have created an organization that is filled with optimism, joy and laughter. 

Charity Matters: Tell us the success you have had?

Jo Ann Thralkill: Our very first year in 2010, my husband did a bike ride across the country again but this time to raise funds for The Pablove Foundation and we raised over $500,000. The momentum continued and we were able to fund a grant our first year. Today, almost ten years later we have thousands of Shutterbugs in 16 cities across the country and have provided seed funding for pediatric cancer.

Since 2010, we have awarded more than two million dollars in Childhood Cancer Research Grants to over twenty institutions worldwide.

Charity Matters: What life lessons have you learned from this journey and how has it changed you?

Jo Ann Thrailkill:  This entire experience has been completely life-altering for me. I think one of the major things I took away from my own family’s cancer experience was that just when you think the world is filled with darkness and hate, you discover that it is actually filled with love.

Things don’t always end up how you hope or plan that they will, but when we were in the trenches of treatment with Pablo we discovered the most amazing support from our community and everyone around us. This gave us not only the financial support but the emotional strength that we needed to start the Pablove Foundation. The experience of starting Pablove has allowed me to always see the light. I am now reminded daily of the love that surrounded me during one of the most difficult times in my life.

charity Matters

 

Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.

Copyright © 2023 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.

Looking back at a Force for Good

max page, the force

This weekend  millions of us will watch the Super Bowl and of course those very pricey ads. I thought it might be worth revisiting the one of my favorite philanthropic friends, Max Page. You might remember Max from his starring Super Bowl ad as Darth Vadar, a few years back.

Max has been a patient at Childrens Hospital Los Angeles  many times in his short life for multiple heart surgeries. He was born with a congenital heart defect and over the years has had over 13 surgeries. Each year over 40,000 are born with congenital heart disease. Since February is heart month and the Super Bowl, Max has been on my mind.

I met Max and his family when we worked together to launch the Junior Ambassador Program at CHLA . The Page family are some of the most philanthropic people I know. They have used their situation and celebrity to the benefit of others time and time again.

Max continues his acting and his passion for philanthropy. His hope is that if someone is inspired to do something because of his journey, that they would consider supporting a place that has given him so much and become a second home, Children’s Hospital Los Angeles and the Heart Ambassadors program. Max said in an interview with Today, “I’m going to do whatever I can to help and do the best to bring awareness to kids like me.”  

Max’s heart may have been defected once upon a time, but today it is his heart and use of the Force that continues to inspire us all.

CHARITY MATTERS.

 

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

Copyright © 2023 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.

 

Season Five Premier: Susan Axelrod CURE Epilepsy

Welcome to Season Five! It is truly remarkable to believe that we launched the Charity Matters Podcast just two years ago. In that time we have introduced you to some of the brightest lights on earth, those who serve. We promise Season Five has an incredible line up of people who will inspire you, give you hope and renew your faith in humanity. These nonprofit founders are not only entrepreneurs but they are problem solvers and doers. Each story gives us hope that we can tackle any obstacle in our own lives no matter how big.

Today’s guest is a perfect example of one woman with a huge goal.  Susan Axelrod is the founder of Cure Epilepsy. She will inspire you with the remarkable story of her journey to find a cure for epilepsy to help her daughter. It is a story you don’t want to miss and the perfect way to start your year and ours.  Susan set out to achieve a goal 25 years ago. Each year Susan and her community  paved the way and ultimately raising ninety million dollars towards epilepsy research. Her work and story should inspire anyone with a goal that feels too big.

 

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what CURE Epilepsy does?

Susan Axelrod: Cure Epilepsy is singularly focused on funding research in epilepsy. This actually started because I am the mother of a now 41 year old daughter with epilepsy. It started in her infancy and after many sort of tortured years of trying to resolve her problems. I started to meet some other parents and recognize that there was a woeful lack of of dollars and attention to epilepsy, both federal government funds and private dollars. That’s our focus because we want to eliminate epilepsy.

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

Susan Axelrod:  My daughter had been happy, normal, healthy baby until she was seven months old.  And she started to have a seizure, which was terrifying to witness as many seizures are. She was she was blue, I thought she was dying. I took her to the emergency room. While waiting to be seen there, she had another one of these episodes, which I still didn’t know what it was. In 1985, I received a report on an EEG that she had had. The report said something about epileptiform activity, and I panicked. I called her doctor, and I said, “Are you telling me she now also has epilepsy?”

I had started to meet some other parents with epilepsy through a support group, which I got wind of waiting in a doctor’s office, which we spent hours waiting in doctors offices and saw notice for a support group and met a few parents who fast forward a little bit ended up being some of my co founders of cure with.

Lauren, my daughter, had a surgical procedure to try to determine whether there was an area in her brain that they could resect that might help. There was indication for the first time that maybe they’d actually localized the focal point.  So we put her through a pretty horrific and barbaric procedure. They literally bored holes in her skull and  implanted electrodes and the  procedure ended up with nothing.

I sat there with my husband and we didn’t know what to do.  Later that evening, I thought to myself, you know, I can either cry for the rest of my life, or I can just slap myself in the face and do something. That is a really clear memory for me,  just saying that’s it, I’m done. I’m done waiting for anybody to provide answers. It just felt like I had to right this wrong and t was just wrong. 

Charity Matters: When did you know you were on the right path?

Susan Axelrod: We knew we had to raise dollars and that was critical. We were very fortunate in that my husband had done some work with Hillary Clinton when she was First Lady. Towards the end of 1998, he was meeting with her and she asked how Lauren was doing. She said, “Is there anything I can do to help from my position?” 

She agreed to to be the keynote speaker at our first fundraiser in Chicago. January of 1998.  I’ve never put on an event in my life. The First Lady spent the afternoon visiting our hospital and learning about epilepsy.  Then she came and did the event. She spoke just eloquently about epilepsy and about what she learned that day.  Well, we had a lot of people that were there for her, who were just blown away by her. That was a big aha moment. Three months after we founded the organization  people were writing notes and were calling they were telling me that night I had no idea about epilepsy. We thought, okay, if people don’t know about epilepsy, they’re not going to give money to epilepsy. 

photo via: Boston Globe

Charity Matters: What were some of your earlier challenges?

Susan Axelrod: My daughter used to miss about a third of every school year just because of seizures. So there were times when I couldn’t get out of the house. The internet was relatively new at the time and email was like a brand new thing. We were working together and we loved each other. And we loved the work and it gave us hope. If we had an event or mailing to do, we all gathered for a long weekend, and stuffed envelopes and licked stamps. Epilepsy is a pretty lonely diagnosis and this gave us a community.

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

Susan Axelod:  I think the very first thing that we did that was huge and life altering for the epilepsy community was to change the conversation. And that was both between patients, families, and researchers and doctors.  I wanted to know, along with my co founders and other people who were working with Cure Epilepsy, why? Why did I have this seven month old baby, that was fine one day and not fine the next day? Nobody to this day yet has been able to answer that. 

I think we’ve, we’ve really gotten the community away from thinking, let’s just create another drug that’s going to maybe reduce the seizures  50% of the time. In our book, that’s not okay. It’s great. I should say that my daughter responded to a one of these new medications in April of 2000.

We’ve we have funded over 280 research grants around the country.  We have opened up new areas of exploration in terms of what they’re looking at and how it affects epilepsy and the development of epilepsy. Those are areas that we were willing to take risks. So I think that’s another thing that all nonprofit can do because who’s else is going to do it? 

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

Susan Axelrod: The happiest day of my life would be shutting down the office, closing the door, locking it up, because mission accomplished, right? That would be that would be amazing.

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

Susan Axelod: I’ve learned the importance of community, the importance of being inclusive, the importance of bringing all players with any sort of potential interest  in your cause together. And that it’s very grounding. It’s very humbling. But I think  it’s been one of the more amazing life lessons and it translates beyond my work with CURE.

Everybody has some value and something to contribute.

CHARITY MATTERS.

 

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

Copyright © 2023 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 Wait is Almost Over

They say good things are worth waiting for. We promise that this will be worth the wait.  Season 5 of The Charity Matters Podcast will launch next week on February 1st.  Like everyone, we needed to take a little break to celebrate the holidays. A moment to catch our breath, to regroup and to work to bring a great new line up of guests for Season 5.

We are experimenting a little bit this season with how often we post and how many episodes to bring to each month. It is hard to believe that we already have over 50 podcast episodes! As I mentioned earlier this month, we are trying our hands at being podcast guests more regularly and not always host. So we promise to share those conversations with you too. Our mission is to spread the word of service and bringing that message to larger groups is part of the job. You might be hearing more of those conversations this season.

Bringing you amazing guests who inspire you, fill you with hope and renew your faith in humanity is our goal. We are always so excited when our guest end up getting national attention after we interview them . A little shoutout to our friend, Maggie Kane from A Place at the Table. Maggie was just on the Kelly Clarkson Show last week. Way to go Maggie!  If you haven’t read her post or listened to our conversation you can below.  Maggie is so much fun and her work is so inspiring.

Speaking of amazing guest, our Season 5 launch will not disappoint. Next week get excited to meet Susan Axlerod of Cure Epilepsy.  Susan will inspire you with her remarkable story of working to find a cure to help her daughter. It is a story you don’t want to miss and the perfect way to start your year and ours.  Susan set out to achieve a goal 25 years ago. Each year Susan and her community  paved the way raising ninety million dollars towards epilepsy research. Her work and story should inspire anyone with a goal that feels too big.

So join us next week. Take a listen to our conversation with Maggie Kane, if you haven’t yet. Get excited to meet the most amazing people this season.  We can’t wait to keep spreading that message of goodness and hope.

CHARITY MATTERS.

 

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

Copyright © 2023 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 51: Free Wheelchair Mission

Did you know that there are 75 million people on this planet in need of a wheelchair? Can you imagine being disabled  and not having access to get around? That is only one of the amazing insights I learned from today’s guest, Don Schoendorfer. Don is the founder of Free Wheelchair Mission. His story is incredible, as is his work in providing over one million wheelchairs to people in need.

Join us today to learn how a MIT Biomedical engineer changed his life and millions of others. You won’t want to miss this amazing conversation. Don Schoendorfer is a truly special human who is an inspiration for all with his journey of service.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Free WheelChair Mission does?

Don Schoendorfer: We’ve designed and learned how to manufacture an inexpensive, durable functional wheelchair that we provide for free to people in developing countries who need a wheelchair. World Health Organization’s estimates that there are 75 million people in need of a wheelchair around the world.

Charity Matters: What was the moment you knew you needed to act and start Free Wheelchair Mission?

Don Schoendorfer: My father worked in a railroad for 49 years as a machinist. One of my older brothers was a chemical engineer and the other one’s a civil engineer.  I just knew from the way we operated at home, always taking things apart and putting them back together, that I would be an engineer. I always knew I was going to do something to help people.

About twenty years ago, we went on a vacation to Morocco.  The first day we were in a very old part of the city, Toronto, probably built during the Crusades. There were dirt roads, buildings close to each other just wide enough for a wagon and donkey to get by. Between the legs of people commuting back and forth on foot, we saw a woman drag herself across the dirt road. She was using her fingernails for traction. And she’s looking at her hands. She’s not looking at anything else but her hands and she’s very careful about how she places them. Her feet were just dragging behind her. Like, they’re just connected to her and they’re not functioning in any way.  She was  bleeding, very filthy and her clothes are torn.

 It was our first trip in a developing country and we were shocked. Shocked at her appearance, but also shocked at the fact that people were just basically just stepping over her. Like she was some kind of garbage and not helping her. We went home and got on with our lives. That’s what I did for 20 more years. Every now and then something would remind me or in the middle of the night. I  would wake up and I’d be thinking about that woman and the struggle she had just to keep alive. 

Charity Matters: What Happened 20 years after you saw that woman?

Don Schoendorfer: A call from God in the middle of the night, in 2001.  He said, “I need to talk to you”  What about? He said, ” Why are you wasting your time? “And I said, “What do you mean?” God said,”Why don’t you use the gifts I gave you to do something for the Kingdom?”   I don’t want anybody to misinterpret, I do not have that kind of relationship with communicating with God. But if I summed up what was going through this was really what I came up with, “Hey, I’m an engineer, I’m an inventor, I can do this stuff.”

I thought, where do I focus my energy?  All of a sudden, there’s this woman crawling across the dirt road. What’s the need, what does she need? I go to Toys R Us and I get some bicycles.  Then I go to Home Depot and I get some white resin lawn chairs.  Then I spend five or six months trying to figure out how to effectively connect them together. And, it’s a white resin lawn chair with mountain bike tires. It doesn’t, it doesn’t look like a wheelchair. But I’m thinking that woman probably would have loved to have something like this. 

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

Don Schoendorfer: When I saw this family change.  Can you imagine if you were carrying your 11 year old son with cerebral palsy?  Can you imagine that this boy’s parents had carried him every day of his life. His parents can’t work, and therefore they can’t make enough money to live on.

When they got their son a wheelchair it changed their life. The parents could work and  take their son with them. They could move him to the shade of the rice paddies where they worked. Now, they could both work and they can make enough money to advance a little bit in their economy. Even better they now have the freedom.

Of course, they didn’t know what was going to happen after we put their son in the chair. They probably thought we’re going to take take some pictures and then take it away from him. Instead, we drove away at the end and left that chair to them. We didn’t come back and take the chair. 

These people are already happy. When you give them a wheelchair, it’s so profound. You can just see how hard it is for men to express their gratitude, some are just choked up and they can’t get the words out. They’re just crying and smiling at the same time. The whole family  doesn’t have to carry anyone anymore. He can go by himself. 

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

Don Schoendorfer: Over these last 22 years, we’ve given out over 1.3 million wheelchairs in 94 different countries, developing countries. We don’t give them away in developed countries because there’s usually options for a wheelchair. In the developing world, there’s no option.  If we don’t give him a wheelchair, they’re going to live their life without one. We’ve got partners who actually give the wheelchairs away for us.

So we work through these distribution partners, and we ship them to the closest ocean port, and then they take it from there. At first I was focusing on just the individual, the woman crawling across the road in Morocco, right? And I didn’t see her family, but she probably has one because there’s no way she could keep alive without having a family. After you’ve given away a few wheelchairs you see how it impacts the family because they are the wheelchair.


Photo credit: Ralph Alswang

Charity Matters: How has this journey changed you?

Don Schoendorfer:  The people I associate with changed. I’m more associated with people that are in this field of humanitarian efforts.  Most of my best friends are in developing countries and I rarely get the chance to see them.  I always think about them. These are the people that totally live on faith. They don’t know where the next meal is gonna come from. Yet, if they met somebody who needed a shirt, they would take their shirt off and give it to him. And that’s the way they live.

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

Don Schoendorfer: There’s so many other things we can do. Think about what you’re good at. Maybe you get the call from God. Or maybe you don’t. Ask yourself,  what am I really good at? And is that what I’m doing to help people? Am I using those tools to help people?  

CHARITY MATTERS.

 

 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 © 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.

Looking back: My Hope Chest

” When you come to the edge of a forest and there is no path-make one that others will follow.”

Author unknown

I couldn’t let October come to an end without discussing Breast Cancer. You may remember a few years back,  I interviewed an amazing nonprofit founder and breast cancer survivor, Alisa Savoretti. Since that interview, I have had four friends who have undergone mastectomies. Breast Cancer isn’t something that only happens in October it is something that happens every two minutes, every day. One in eight women will develop breast cancer over the course of her lifetime according to the American Cancer Society. Breast Cancer does not discriminate from the rich or the poor. To be honest I had never thought about what happens when you get breast cancer and have no insurance? I assumed that Medicaid and Medicare covered everything. Well, I was wrong.

Nonprofit founder, Alisa Savoretti, had breast cancer, a mastectomy and no insurance for reconstructive surgery. The result was the creation of My Hope Chest, a nonprofit that helps to fund their reconstructive surgery. Alisa and I had an incredible conversation that left me feeling inspired by this amazing warrior who fights for women who truly need one. She has left such a lasting impression on me that I wanted to re-share her story.

Charity Matters: What was the moment you knew that you needed to act and start My Hope Chest?

Alisa Savoretti: Hearing you have cancer is a devastating moment. It’s one thing to hear you have cancer but it is another thing to realize you have cancer. It’s another to realize you do not have insurance and you do not qualify for Medicaid. This is what happened to me at 38 years old. I had been working in Las Vegas as a showgirl and had recently moved to Florida to begin an online furniture business, before companies like Pottery Barn existed. I had borrowed funds on credit cards to launch Retrohome.com in 1999 when I found out I had cancer. The doctor said to take care of the cancer, focus on surviving and worry about the reconstruction later. 

I survived but lived without my breast for almost three years. You have no idea what this does for you as a woman, for your mental well being. During those three years, I reached out to organizations all over the country, government, nonprofit, anyone who could help me to become whole again. I discovered that there wasn’t anywhere to go. I felt deformed, depressed, frustrated, had metal anguish and enormous financial stress.

I went to Vegas to work at The Rivera. The 1998 government law now mandated that their group policy could not decline me insurance in order to get my reconstructive surgery. I realized how my own self-esteem, confidence, and self-worth as a woman returned when I could look in the mirror and could see my whole physical being once again. It was my healing, a restoration in body mind and spirit.

While I was in Vegas, I volunteered for a NAWBO (National Association of Women’s Business Owners) event. I told the women from NAWBO my story and these women rallied around me and with their help, I was able to start My Hope Chest. Six weeks later, I  had my 501c3 on December 3rd, 2003. We will celebrate our 15th anniversary this year.

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

Alisa Savoretti: Some days it feels as if I am pushing a boulder uphill with a toothpick. After fifteen years of doing this at the grassroots level, the work is very hard. What fuels me is knowing that thousands and thousands of women are missing their breast and this shouldn’t be happening in our country. Making women whole again is our mission. I think about more women are surviving breast cancer and that’s true. What about their quality of life if they are not whole?

These women are sick and often lose their jobs because they can’t work. They are now disfigured, deformed and depressed. The ripple effect of not being whole is devastating on marriages and families. This work has become my life’s mission. I am not married, cancer made children no longer an option and for the past fifteen years, this work has been my life.

Charity Matters: When do you know that you have made a DIFFERENCE?

Alisa Savoretti: We pick up where the government programs leave off. That is why we exist.  Our biggest referrals come from nonprofits such as the American Cancer Society, Susan G. Komen, and Care.org.  We get referrals from them weekly and we can not tell our clients if or when they are going to be helped. They sit on a waitlist while we try to raise the funds to make their reconstructive surgery happen. Helping women to become whole again is what fuels me and just knowing that there is always a list of women waiting for us to find the funding.

I know that we have made a difference when we can help them with whatever they have asked for and the letters they send us.

Charity Matters: Tell us what success you have had?

Alisa Savoretti: We help women every year in a small way and I feel blessed that God picked me to do this task. Every time we get the word out about our work it helps fund someone’s surgery. Shining a light on this cause is SO important. We have been able to fill a gap where other breast cancer charities leave off. If there was another organization doing our work we wouldn’t do it, but sadly there isn’t anyone else. The women we help are eternally grateful for all we have done and to me, that is the success.

Charity Matters: What is your vision for My Hope Chest going forward?

Alisa Savoretti: We will only exist until there is a cure for breast cancer. Of course, the big dream is that there is a day when our services are no longer needed. Ten years from now, I dream that we have enough resources, funding, surgical partners and angel warriors that we can help women as quickly as they are referred to us. I dream of no longer having a waitlist and being able to have a more efficient meaningful impact on these women’s lives.

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

Alisa Savoretti: God had a different plan for my life. I have a quote on my desk that says,” When you come to the edge of a forest and there is no path-make one that others will follow.” I feel like that is what happened with My Hope Chest. My life’s lesson is that when you persevere you will make a difference. The fact that this even exists in 2018 and is still flying under the radar and that there are women, thousands of women in this country living without their breast.  My home has been refinanced three times to keep the funding going for My Hope Chest. I have taken extra jobs at the grocery store to fund this. The lesson I have learned is that I have to persevere to help these women in any way I can. I cannot give up on them.

I think that changing even one life is important. Things are bigger than us, this mission is bigger than me and I have tied my life to making a difference. For me, I am grateful I was chosen for this journey. I am grateful to keep doing this work and I pray the Lord that My Hope Chest gets to leave a legacy on this earth until there is no longer a need for our services. That is my utmost prayer.

In the end,  I know that I have done my very best.

 

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.

Gordie: A legacy of teaching

Gordie's story

Next 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 fentanyl, covid and so much more, it seemed like the right time to re-share 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 eighteen 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 eighteen years later, our vision is becoming clearer and we realize just how precious each life is……

Charity Matters.

 

Sharing is caring, if you feel moved or inspired, please 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.

Melanoma, looking twice

Summer is in full swing and that means the sun is strong. I was recently at the dermatologist getting checked out. My visit reminded me of this conversation a couple years back. So I thought I would re-share it again today for all you sun lovers.

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

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

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

Marianne Banister Wagonhurst: When this happened to our family, to our daughter, Claire, we were blindsided. 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 deaths in young women 25 to 30. For young people, this disease is more aggressive and invasive than in older people.

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

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

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

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

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

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

About her junior year when we thought we were well past Claire said, “Mom, why do you think this happened to us?” I said, “Maybe being who you are because you’re so positive and energized. And being what I do professionally, you know, maybe we can do this together when you’re ready?” Claire said, “Yeah, when I’m a senior, then it won’t matter. And I can advocate.”  

She still was not quite there yet wanting to share her story. So we knew down the road, that’s what she would want to do. The bottom line is I just couldn’t sit here with this information and not warn other parents. If someone had raised the flag of awareness before us, then maybe she’d still be here.

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

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

Claire’s friends did this dance a THON and raised $24,000 called Moves for Claire. I didn’t know how many people my daughter knew.  There were 500 kids there and they had sponsorships. We realized they’re listening and paying attention now, so we need to take advantage of this. If we wanted to do this in her memory, we had to do it quickly. Her friends have been our biggest force.

So because of them we then went forward. We have collegiate ambassadors, who started the program.  They were in the high school class of 2015 and the college class of 2019. Almost one hundred of them are now  on 46 campuses. Each of them are doing peer to peer education, mentoring and awareness programs.

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

The kids came up with a lot of these ideas. Today, we have partnerships with US lacrosse and we work with the Melanoma Research Foundation. Our organization has been to Capitol Hill to campaign for funding and support for research. We are developing a partnership with Teen Cancer America. If a young person is going through cancer, guess what that puts them at elevated risk for melanoma.

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. If I don’t keep this foundation going and do the work that needs to be done, then I’m not fulfilling her purpose.  That means we would have lost her for no reason.

She has changed lives and she has saved lives. We have had a number of young people who have found melanomas early and they always tell me,” You know, I thought of Claire, and I went and got it checked and it was a melanoma.”

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

Marianne Banister Wagonhurst: My husband always says if we save one kid, we’ve done our work. We’ve done that many times over. I think what I’m most proud of is we’re changing the narrative.  Because of us, many organizations are now creating a Young Adult adolescent melanoma focus.  In six years, we’re starting conversations, and making people understand that it’s just not a matter of putting on sunscreen, and calling it a day.  It’s elevating the importance and value that young people are getting this disease to the rate they are and that it is not rare.

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

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

 We just don’t want anybody else to go through what we did, because it’s so darn preventable. When you think about it, melanoma is one of the cancers that you have the best odds of seen visually externally on your body. A screening takes 10 minutes.  You don’t have to drink anything, don’t have to get an MRI and you don’t have to get a CAT scan. All you need is 10 minutes with a dermatologist with a scope. 

Charity Matters: How has this journey changed you?

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

 I’ve had a lot of loss in my life.  I’ve always lived my life as you have to thoroughly embrace it each day as it is. My faith is stronger than ever because I know she’s fine. I know she’s okay. 

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

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

It’s not that you ever want this to happen, but if it does, to know that something has been inspired by her in a positive way. That’s what we look at.  Our daughter is having a great impact because of what we’re doing and that’s the best we can do for those we love.

 

CHARITY MATTERS.

 

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.

Looking back at West Coast Sports Associates

Summer is in full swing and it is a season when we all what to go outside and play. For many students who live in the inner city playing, sports more specifically isn’t an option. Twenty-five years ago four college buddies who loved sports decided to change all of that for thousands of kids across Southern California.

Join us today as we look back at a fantastic conversation with one of the founders of West Coast Sports Associates, Mike Gottlieb. As Mike shares the journey of turning a passion for sports into an incredible nonprofit organization that has raised millions for inner-city youth.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what West Coast Sports Associates does?

Mike Gottlieb: It’s not like a lot of other charities out there.  We found kind of a gap in the youth sports world that we’re hoping to fill and grow. Our niche is lower and middle-school-aged children who live in underserved areas, getting them access to team sports.  We all have such great experiences with youth sports growing up, that we just can’t imagine what things would be like for kids if they couldn’t afford to play sports? And there are so many benefits to youth sports.

Charity Matters: What was the moment you knew you needed to act and start West Coast Sports Associates?

Mike Gottlieb: It all started with three really good friends of mine that I’ve known since college, Chip Eggers, Alan Lynch, and Mike Rosenberg. What we all have in common was a passion for sports. We didn’t necessarily have the end result of what West Coast sports Associates was but we knew we had something. A few morning breakfasts and we finally kind of came up with the concept.

We all have had such great experiences playing team sports growing up and we want to make sure that all kids had the same access. To start, we didn’t know what to do. So we decided to have an event where we’re each going to invite five or 10 friends of ours. We would host it, and tell people about our plan. And honestly, we’re not expecting anything.

Meanwhile, Alan was good friends with Steve Soboroff, who at the time, was the head of La Parks and Rec. Alan worked with Steve who identified a park in South LA called Jim Gilliam Park. They had a lot of at-risk kids who were foster kids and or their parents couldn’t afford to pay the entry fee to play flag football, soccer, basketball, or whatever sport. So we decided whether we put up $10,000 to support their programs for the year and let the park director pick the kids. He focused on kids who stayed out of trouble and went to school.  We put them all on scholarship.

We started in 1994 with just four of us committing $10,000 to today giving out about $200,000 a year. And it just happened because we all had this same passion for sports.

Charity Matters: What are your biggest challenges?

Mike Gottlieb: Well, I would say when we first started, we grew slowly.  We were all volunteers for maybe the first 10 years. We had no, literally no help and we just did it all ourselves.  I think during Mike Rosenberg’s term, he finally brought on a part-time executive director. Over time the part-time Executive Director evolved into a full-time Executive Director.  Our treasurer and board members we’re all volunteers.

All of the founders have all taken turns being President. Between the four founders, everyone in our group, there’s a connection to one of the four of us. We all have this passion for sports. I guess you could say we turned an addiction to sports into something positive.

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

Mike Gottlieb: We’re not here, because we’re searching for the next professional athlete. We’re just here to help the average kid just participate in sports. We want them to get the life lessons when you play sports, you have to be more organized with your time, learn time management, learn how to listen, follow directions and learn how to be a leader. The statistics about the future health of these kids that do and don’t participate in sports are really mind-boggling. Students who participate in sports have better grades, stay out of trouble, form friendships, have more self-confidence, are healthier and the list goes on. We are just trying to help the average kid and there are so many benefits that we know we are making a difference.

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

Mike Gottlieb: We’ve been doing this so long. I read the other day that Russell Westbrook used to play sports at one of our parks. And there’s Tony who played for the Dallas Cowboys who played another park. So we do it enough, we’re going to get some success stories. Those success stories are, are pretty exciting, because you just you never know, the kid who can’t play, he’s going to do something else. In those underserved areas, that’s something else that may not be good. I think we all know in our hearts, that there are kids we’ve saved because they’ve been able to play sports. How many I don’t know that. I know for a fact that that happened.

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

Mike Gottlieb:  I would say, half of our programs are different parks in LA City Parks and Recs. The other half are nonprofits that directly do different sports like Heart Harlem lacrosse or Beat the streets for wrestling. We not only support the Parks and Recs departments but then, in addition,  give funds to nonprofits that are supporting work with special needs kids.

We did actually, the first-ever public-private partnership between The City of LA, twenty-some years ago with youth soccer. When you understand how AYSO works, they’re all volunteers and they don’t have a big budget, like the clubs. So they really have to just kind of scrap to get facilities to get fields. So we put together the first-ever partnership with LA. and have done more of those public-private partnerships since.  We’re trying to do more to empower a nonprofit or the parks.  The idea is that we hope when we start with a particular location, that we can get them off the ground, and ultimately they can become self-sufficient in raising their own funds. Then we can take that money and find someone else and that’s what we tried to do.

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

Mike Gottlieb: We have thought about expanding,  so we are doing more in Orange County. That was kind of a test model and we’ve sponsored some programs down here. Can we do something in San Diego, San Francisco, Bakersfield, Portland, and Seattle? Then we’re really on the whole west coast. I would love to be able to see this happen in other cities and there are other groups that do things like this. Not exactly, but in every major city there is some group that’s helping with youth sports. In theory, we could franchise. It would be great to see this adapted in other cities and help welcome.

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

Mike Gottlieb: Oh, gosh you know, you look back and realize we didn’t know when we started where we were going. In looking back on it I feel really good that not only have we helped the kids, but we’ve energized people in our group to go out to help our mission.  They’ve also expanded into other youth helping other youth out whether it’s sports or academics or other at-risk kids.  I think we’ve created an inertia that and we’re examples to other people. I think, “Okay, we’ve energized hundreds of people. And we’ve raised probably $5 million-plus but it’s just I think it’s the domino effect. A really positive domino effect.  We know without our work and without us, that doesn’t happen so that that feels good.

Charity Matters: How has this journey changed you?

Mike Gottlieb:  The other hope is that whatever your passion is you can do the same thing. Whether it’s sports or a cure for a disease, whatever your passion is you can do the same thing. Our hearts just happened to be sports and kids, because that was just pure.  Whatever your passion is, all you got to do is find one other person, and then talk about what you’d like to do. Don’t have any ambitious plans about how fast you grow, it can be small, if you just affect one other person, you’ve done something positive. That’s why I love what you’re doing, getting the stories out of the founders, in hopes that it’ll encourage other people to do the same thing.  You know, at the end of the day, give more than you get.

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 © 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.

Looking back at Girls Leading Girls

As summer camps are in full gear everyone is looking for great ways to engage their children this summer. Since we are looking back at some fantastic conversations we had earlier this year, it seemed like a great time to revisit our conversation with Bre Russell.  Bre is developing the next generation of women leaders through her amazing nonprofit, Girls Leading Girls.

Join us as Bre shares her inspirational journey from a student-athlete to a nonprofit founder teaching thousands of young women how to lead. So if you haven’t heard this conversation, treat yourself with a long summer day and listen  to this amazing human.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Girls Leading Girls does?

Bre Russell: We are a nonprofit that trains girls and women in leadership advocacy and life skills through soccer. We are the first-ever all-girls soccer organization with all-women coaches. Every year we serve over 700 girls ages five to 17 in the Bay Area.

Charity Matters: What was the moment you knew you needed to act and start Girls Leading Girls?

Bre Russell:  I always knew I wanted to be an entrepreneur. That was always something that appealed to me.  I worked at a young age because we were just trying to survive my family. We didn’t grow up with a lot of money, and I relied on a lot of people to help.  My coaches making soccer even possible for me was huge. As a result, seeing other people helped me made me want to pay it forward and help others.

I’ve been playing soccer since I was five years old. Soccer was the game that I fell in love with it. It was a place where I was recognized, I could just be myself, and I could escape the struggles that I was facing at home or in school. During my time at Sacramento State, I played soccer and then after college, I decided to go into the Peace Corps. I was living in a village on a really small rural Island. A place where women didn’t have a lot of opportunities. Some girls saw me playing and then asked if they could play with me. After that,  we formed a team.

I found out FIFA was hosting a tournament nearby on another island and I organized to get us fundraising for uniforms. We went to the island and played on this hot volcanic ash. Three days into this tournament, we ended up winning first place. It was one of the highest moments I ever felt from such a big challenge. We won this huge Wimbledon size trophy. When we came back to the community they were waiting for us with flowers on the beach, to congratulate us. They were so proud of us! The team wanted to run around the community with the trophy.

A light bulb went off that soccer is not just a sport, it’s a vehicle for women’s empowerment, economic opportunity, equality, and community change.  These women were now seen as winners and that was all that I needed. When I came back from that experience, I knew I needed to start Girls leading Girls.

Charity Matters: What are your biggest challenges?

Bre Russell: Well, it’s definitely a grind, I think all entrepreneurship starts as you are grinding, you’re hustling. After Peace Corps, I was working full time for another nonprofit and building this on the side.  I was also coaching soccer in the community and that’s really what helped me get it going.  People in the community here in San Francisco, saw me coaching and said, “Can you coach our daughter? Because there are not enough women coaches.” This was in 2014 in San Francisco.

There’s definitely a lack of representation of women in sports at all levels. Eight years later, we’re starting to see that change.  When will we have women as not just referees and athletes, but owners of these higher-level clubs and teams? The challenge is there are not enough women coaches. We are essentially trying to change something that is also making it hard for us to do what we do.

We are recruiting, training and mentoring women to become coaches, which most never think that they can. So there are psychological barriers there. And we’re going up against male-run the old traditional model of coaching.  This is why we are trying to create something different because the old traditional model really was a disservice to girls.  Girls dropping out of sports at young ages, the statistics are there. Did you know that girls drop out of sports by age 12? That is over 50% rate that boys do.

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

Bre Russell:  There are a couple of things that fuel me. One is the girls in the program. Some of them I’ve known for eight years. To see them start with me and then to see them develop from a young age into confident, strong, young women on and off the field is just amazing. I mean, this is the beauty of kids that grow so fast. You can see that growth right before your eyes.

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

Bre Russell: We serve 736 Girls.  That was our biggest year yet and that was amazing coming off a COVID. As I said the demand is higher because of health issues and the stagnation of being home. It’s all come out in the surveys we put out to the girls and their parents. To hear things like, “Oh, my daughter lost her joy for life during COVID, when she came to your summer camp, it was like, she was a new person.”  Or,” I’ve never seen her smile like that once. ”

Hearing those stories are really an impact. That’s the depth. It’s not just soccer, we are teaching these girls confidence, self-esteem, and positive peer relationships, and we’re building them up, because, there is this huge confidence gap for girls. For me, it’s seeing this organization grow and how many girls we serve, but then also seeing the impact.

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

Bre Russell: When I was coaching, one of the key things I would say is,” What’s the most important play on the field?” They would say,” The next play.” So whatever just happened, let that go. Now you are focused on the next play.  I think we can apply that to life too. Because things happen to us and it can help you see that moments are temporary. It can help you really savor the positive wonderful moments too because you know, it’s not going to last. Then it also gives you the action of okay, what am I in control of? What is important to do next?  So it’s teaching many different things.

With my staff, we say,” Done, is better than perfect.” This is particularly important for women because perfectionism is a problem. We want to be so perfect that no one can criticize us. That’s what it stems from. I tell them all the time,”Done is better than perfect.” Perfectionism doesn’t exist.  We’re here to learn, right? I’d rather see something than nothing.  I’d rather you take a risk than not at all because you’re waiting for it to be perfect.

Charity Matters: How has this journey changed you?

Bre Russell: I’ve definitely changed. When I went into the Peace Corps, I was 25 wide-eyed, and hopeful. I think I’ve changed in a variety of ways. Growing this organization, I’ve definitely learned to be more patient. In the process, of working with people in growth being more patient is probably the biggest lesson I’ve learned.

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

Bre Russell:  The dream is to expand and open branches of our program all over the world, starting in the US, and then having that impact worldwide. That would mean serving hundreds of 1000s of girls and women, empowering them to be confident and be leaders on and off the field.  It would give them the tools they needed to succeed whether or not they continued in the sport. We’re teaching them how to take risks, how to speak confidently, and how to go after what they want. So when they are older, they can have that conversation about a pay raise with their boss, or they can ask for that promotion. The goal is to just help the girls we serve to live the best life and go after what they want with confidence.

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 © 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.

Episode 41: Sow Good Now

Sports teach all of us so many lessons. We learn as children how to get along, how to work together, and physical fitness. When we think of youth sports we don’t usually think about philanthropy. That is until Mary Fischer Nassib and her friends came along to change all of that.

Mary and her friends were all college athletes and mothers of athletes. They had seen teams of kids that had too much and they had seen those with too little. They decided they could change all that with their nonprofit Sow Good Now. Join us for an uplifting conversation about a new way to teach philanthropy, leadership, and service to others with this amazing organization.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what SOW Good Now does?

Mary Fischer Nassib: There are 45 million youth that are involved in organized sports in the United States every year. In contrast, there are only 500 youth philanthropy programs.  So I thought, philanthropy is good for youth, it’s leadership development, and finding your passion. We know that it’s good for you, that’s good for communities, you lift diverse voices, the communities get the benefit of it, and the young people not only become beneficiaries but become active agents for philanthropy programs.

The kids come together, and they play sports to raise money for other kids. The teams are not only where the volunteers share their skills with youth from underserved areas but fundraise for them in the process. Let’s say there are 30 kids on a high school soccer team and they bring 30 kids from the Boys and Girls Club seven miles away.  That high school soccer team plans the match, arranges it, and coordinates a fundraising event, which we call a GiveBack,  to make it happen.

In the process, the high school team learns leadership skills, event planning, and service learning or doing it in its activity-based philanthropic education. Why we’re so unique is that we give the team ownership. You do the fundraising, you do the planning and you decide what organization you want to grant to. There’s a kid on your team that has a special cause you can help. Not only do you have the power to run this give back, but you’re organized and if someone else needed help, you’d be able to do that too.

The part that Sow Good Now does that work is we bridge the relationship between the team and the underserved youth. We set up a donor-advised fund with three or four players or the coaches, sometimes we even invite the program director from the youth group, whether it be the Boys and Girls Club or another organization. We want the students to understand that they do have tools that can maximize their personal lifetime impact. The fund is named by the team and they will grant out some and keep some in the fund.

Charity Matters: What was the moment you knew you needed to act and start  Sow Good Now?

Mary Fischer Nassib:  We named it Sow Good Now because we want young people to start sowing their seeds of goodness, today. Most philanthropy starts near retirement age and by the time philanthropists get into their stride, they’re facing the end of their life. So, as a mother of five athletes, I noticed that there was great disparity in a lot of the players in their access to sports.  That was symbolic of the great disparity that we have in our country. And I always thought, “Well, gosh, there’s so much excess here. And so much need there? How can we build bridges?

In July of 2018, the three of us founders (also former college athletes, and mothers of athletes) got our kids and their friends together, and we told them about philanthropy. We invited kids from the Middle School in an elementary school to a football Give Back.  As a mother, and a former financial advisor I know my way around the financial services industry, as well as the sports industry. I studied philanthropy and decided that I would bring others along with me, ie, the athletes.  They’re already primed, they already understand the value of teamwork and diversity, right.  You can’t win if you’re thinking about yourself and that is the same with athletes.

Charity Matters: What are your biggest challenges?

Mary Fischer Nassib:  That first year, everywhere we went, everything played out the way we hoped.  We got into high gear, gained some traction had a good fundraiser.  Then COVID in February of 2020 was the biggest obstacle.

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

Mary Fischer Nassib:  I’m really trying hard to bridge these long-term relationships and I think it’s through relationships, that we will ultimately build confidence.  We are taking those geographically adjacent kids but socioeconomically diverse, putting them together, and then connecting them at a higher level.   I’m passionate about that, and I know I can help them.

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

Mary Fischer Nassib:  As far as Impact Reporting, we measure volunteer hours. We also say have you volunteered in the past X number of years, so we can report out on the volunteer rates. The other impact report, which is really a byproduct of the work we do is college campuses are reporting that 86% of their athletes are saying that mental health is an issue for them. The work we do at Sow Good Now reverses those two numbers. By volunteering all the research shows that you feel better, and you’re more connected.

We say we shift the focus from achievement to service, that’s really our goal.  Service to others is a way to pause that is a way to let them glimpse that there is life outside of achievement. The two impact pieces are the improvement of mental health and the increase in volunteerism.

One of our softball players did her first Give Back and engaged her team during the pandemic.  She got her players to do virtual videos for kids. She developed leadership skills by building her Give Back and has now been hired by a nonprofit. So those are very measurable results. In a very short time, we’re not four years old yet, and one and a half of those years were COVID. So I have no doubt what we can do. And we’re trying to get work so that we can do more and meet the demand. Everybody is one huge energetic team.

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

Mary Fischer Nassib:  That dream to me is that every team has its own identity. I dream that there are teams of philanthropic athletes who share the same passion, the same level of skills, and give back as they do in their sport. That the number of 500 youth philanthropy programs grow and the financial services industry makes charitable giving one of its priorities to make giving more effective, more inclusive, and more diverse. That’s my dream. The athletes are making it happen, and I’m honored to serve them when I look at them. I think of the potential that they have to do good.

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

Mary Fischer Nassib:  I think  I really focus on what’s in front of me. The saying is to work with what you have.  Everybody’s striving for whatever else is out there, I wish I figured that out earlier than I did.

Charity Matters: How has this journey changed you?

Mary Fischer Nassib:  I’ve changed a lot. I am definitely more fulfilled, I’m happier, I feel closer to where I should be and I am proud of myself for being a role model. There are a lot of risks, I’m from a family that really doesn’t understand the nonprofit world.

One day, I got a note from my goddaughter and she said,” Happy Birthday, and thanks for being a great role model.” I’m hoping that not only am I changing the world for the good in the sports world, but others are able to see that piece of themselves. I hope that they want to give back and that they say, “Well if Mary can do it, I can do it.” And that’s what I’m I’m kind of hoping for because that’s what makes me happy.

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 © 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.