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Episode 53: Hearts of Gold

Since this week is all about love and Valentines, it seems only fitting that today our guest is all about love. Her name is Deborah Koenigsberger and she is the founder of the nonprofit Hearts of Gold. So many of us pass the homeless in our cities and keep on walking. Not because we don’t care but because we are afraid and often feel helpless.

Not Deborah! As a young mother, she didn’t pass a homeless woman and child i the park, she stopped. When you hear here remarkable story about the impact one person can make, it will make you think differently. So join us for a remarkable conversation about love and action. Think of this as a belated Valentines Day gift to yourself!

 

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Hearts of Gold does?

Deborah Koenigsberger: Hearts of Gold is a 28 year old nonprofit organization that supports homeless mothers and the children in shelters. We do that by what we call adopting shelters that house this demographic. So the shelters already exists. They are run by their city shelters or whomever entity owns the shelters and we go in with all the frills.

When we started it was really about making sure the moms and kids had something in their lives that would give them a good memory. So many of them coming out of domestic violence. We have programs with moms, and we have programs for the kids. Our goal is to basically help them get out of shelter life transition into housing and into permanent housing. We want them to just have a chance at what we all have, which is a normal life.

Charity Matters: What was the moment you knew you needed to act and start  Hearts of Gold?

Deborah Koenigsberger: There isn’t one moment but three that all built on one another. The first, I would say is a Stevie Wonder song that started it all.  Peace sign is the name of the album and the song is take the time out. the lyrics are, ” take the time out to love someone reach your arms out and touch someone, the king or some homeless one. We are one underneath the sun.” I was 12 when I heard it and it left a huge impact on me. 

What I get from that song is that these people who are homeless on the streets, somebody gave birth to them. One day, there was a joy. Somewhere along the line, life took a left turn. And it doesn’t mean that it couldn’t happen to any of us. It just means that it didn’t happen to us, right? It happened to those people. So if we are not a part of the solution, if we don’t attempt to be a part of the solution, then we really are a part of the problem.

The second thing was on my way between work and home was a woman and her three year old daughter. They were sleeping in a cardboard box in the park. I walked through park and my boys were babies at the time. This was our neighborhood park. I finally approached her and had a conversation with her a few times. She told me that the shelter wasn’t safe and she’d rather take her chances on the streets. This went on for just a couple of weeks. And then she was gone.  She disappeared but she motivates me every night.  She powers my narrative because I know that out there. 

The third part of the trifecta was when my oldest son was a baby, we met Bobby Brown. This was just before Bobby became Bobby Brown THE makeup artists.  She was telling me that she did this volunteer work in a shelter where she would apply makeup to the moms teach them how to do makeup and give them product.  I went with her to the shelter. I did styling Image Consulting so Bobby said, ” Why don’t you talk to the moms about just what to how to put themselves together. and I will do my makeup there.”  So we did this workshop together and she would provide makeup artists.. But in that workshop, the moms came with their kids.

I decided that  Christmas  I literally went out and bought all these gifts for each child. At the time it was just me and that was 1994. I became a nonprofit, because when I approached the shelter saying I wanted to raise money for you to do these events. They said, “We can’t guarantee that that money will do that, which I appreciate it very much. Our challenge is that we have so many emergency things that happen we can’t guarantee the funds will go to your program.”  So I said, “Okay, then I’m gonna do it myself.” 

Charity Matters: What were some of your biggest challenges when you started out?

Deborah Koenigsberger: It’s particularly hard when you realize the problem that you are trying to solve is not solvable.  And you certainly are not going to be the one to fix it.  I believe in the starfish story. Although you couldn’t save every starfish on the beach, the one you threw back today got saved.  That’s what saves me when I would fall down and feel that this is so frustrating.  Then I would look at one of my moms, or get a phone call or a text from somebody, and they will say this happened today. And for me it’s just like joy.  

You’re also realizing the best thing that we can realize as founders is that you have to get help. And you have to accept help to bring in people.  So there are all these learning curves.

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

Deborah Koenigsberger:  There’s so many ways to educate people out of darkness. Darkness is ignorance. I’m an immigrant, from an immigrant family. The only thing that we know as immigrants is you gotta work. That’s the only reason why you’re here because work is gonna provide something better and different for you. So I know that it’s the American way. Work was what this country was built on.

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

Deborah Koenigsberger:   When I met Stevie Wonder in 2001, he said something to me, because I told him why started Hearts of Gold. Stevie said, ” My little song made you do all of that.” Like, do you have any idea? Oh world, and I just thought, that little song wasn’t just words on paper. It was such an invitation to open your heart and see something besides yourself. 

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

Deborah Koenigsberger: Over 37,500 moms and kids helped her impacted children who were the first one in their entire family line to go to college. This Christmas we bought, wrapped and distributed over 5000 toys. I think we should understand that what we’re doing is bigger than all of us and call in our communities.

If you are blessed enough, if you are given the gift of sharing yourself with somebody else in a way that will have impact and change something, you’re blessed.

Charity Matters: How has this journey changed you?

Deborah Koenigsberger: I’ve matured a lot.  I have found and met incredible people along the way who have taught me invaluable lessons. And I’ve learned invaluable lessons from people who weren’t really trying to teach me anything, but I learned it anyway. 

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

Deborah Koenigsberger: I learned that a single human being can really affect major change and it all starts with an idea.  I think of myself as a vessel. And I think that I am just there because I have that kind of energy.  We don’t all have the same energy or the same way of thinking about things. Some people have the talent to help you create something, and that’s magical, some people have treasure and that  is immeasurable. Now you have time, talent, treasure, and everybody has a different one of those that they can bring to your to your cause. One of the lessons that I think is really important that I’ve learned is that there are so many kind people out there in the world.  

When we lift one we lift all.

What I’ve learned is that you can’t save all the starfishes  even if you have all the resources in the world because it’s just not possible. But what you can do is get a whole bunch of more people on that beach.  God of the things I’ve learned a lot, there’s so many ways to love people.

 If you’re at the end of your story and you could write that one person’s life was significantly impacted by your being here, walking the earth leaving a footprint.. Then for me, I am full. I am full. 

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.

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Charity Matters Inspiration

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.

 

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Causes

Episode 50: Mindful Littles

As parents we all want our children to be kind, empathetic and good humans. If you are reading this you are definitely someone with those goals. Recently, when a mutual friend introduced me to today’s guest, Tanuka Gordon I was intrigued by the name of her nonprofit, Mindful Littles. The conversation with Tanuka was even more intriguing.

Join us today for an inspirational journey of healing, service and making compassion a daily habit. One mindful habit can change your thoughts, your day, your life and the world.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Mindful Littles does?

Tanuka Gordon: . What we are focused on is making compassion, a habit. Our method of doing that is to focus in on service. That is not just service as you would think of from like a traditional community service standpoint, but to really think of this idea of mindful service experiences.

What I discovered very early on, was that we when we get to doing community service, oftentimes we’re doing good very quickly. There’s a huge opportunity to not just feel good in our bodies but by practicing things like mindfulness to really connect to the why behind our service work. And so we have a very high impact experiential framework that we use to bring these mindful service experiences to schools, to companies and community organizations.  We make service possible, accessible in ways that allow service to become a way of life. Hopefully something that sparks continued curiosity to give and to learn about the communities that we are helping through our programs.

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

Tanuka Gordon: I’ve always wanted to volunteer. But really, it wasn’t until six years ago, with the start of this organization, that it became a full time gig and my purpose and in many ways. I was an applied mathematics major out of UCLA and wasn’t sure what I should do with applied mathematics. So I actually went into consulting at Andersen and then fell into a tech career doing product management for many years.  During that career path, what I did was really focus on customer experience. So to really think about how we design products and services, to create the most incredible customer experiences.

I loved the work. But I felt this itch literally this itch in my heart that I’m supposed to be doing something different. When I became a parent, it was then that I began to question how I was spending my time. If I was spending time, in a career where I felt like there was a gap and fulfillment I was, was like, well, I should really do a little bit more searching for myself?

About six years ago, my oldest was about five, I was looking for ways to engage her in volunteerism.  I made a commitment to myself that volunteerism wasn’t just going to be another to do. Rather, I wanted it to be a way of life. So I made a monthly commitment to go pack rice and beans at a local crisis center with my daughter. We would leave that experience and would feel disconnected from who we were helping.  I felt a little bit even board and volunteering doesn’t need to be exciting all the time. But having spent a career in customer experience,  I realized  we’re missing this massive opportunity to actually solve for family engagement. And that really started it all.

Charity Matters: What are your biggest challenges?

Tanuka Gordon: In the early days, I suppose the biggest challenge was even knowing and trusting that this was going to become a business. Just knowing how to keep up with the great demand without understanding the business model.  I would say that that’s probably one of the biggest challenges that we that we encountered is just there were there was a big appetite for this work. And I was really starting to understand with each new step that this thing had legs and that this thing could grow. Fully coming into acceptance of what that meant, not only for our organization, but for me as a leader. 

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

Tanuka Gordon: It’s two things. Each each of these two things are kind of layered, I suppose. It’s the internal impact and the external impact. By internal impact, what I mean is, with the start of this nonprofit, I began a deep healing journey for myself. And over the last six years really had an opportunity to heal. A lot of the practices we teach in this program, mindfulness, self compassion, that are woven into the service experiences that are woven into our compassion training programs, are literally practices that helped me on my own healing journey. So I vehemently really believe in this work because I, myself have healed through feeling good and doing good.

The external impact comes in multiple layers. First and foremost, my children and my family. And it has been absolutely a messy process. People just assume because you have a mind, an organization,  Mindful Littles, that everything is constantly peaceful at every moment. The reality is you’re growing a business, laundry, kids, pick up all this. But to find the ways of compassion within the space of chaos, that is the art, right? That is what we’re after.

When I see my older daughter, wanting to write gratitude cards for parents of her friends, who are organizing birthday parties, because she wants to thank parents for doing that.  Or I see my younger daughter in the way that she cares,  I can see this right. The impact we’re having on community, it is one miracle after another.

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

Tanuka Gordon:  For us, engagement is really important.  Specifically, focusing in on connectedness. The CDC has specifically said that connectedness is the number one protective factor for mental well being and youth mental well being. So if we can harness the power of mindful service experiences, to increase engagement, and increase connectedness, through these experiences, then we can have a real impact. Amplifying that impact is the research evidence on the benefits you can gain from engaging in service. 

The social impact we have had in schools that we’ve delivered programs to is another impact. In Butte County schools we have assembled 52,000 meals. We’ve gifted 10,000 pounds of produce through kids Farmers Market experiences that we’ve brought. Assembled thousands of hygiene kits and backpacks. The power of putting the experience with the service that is getting to the doing good. You’re connecting it to the why, and getting to your felt experience. And when we do that, the impact is tremendous.

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

Tanuka Gordon: I believe that in 10 years, we will be able to be in every public school district in the country. If it is in the cards for us to even think global. It’s a massive, massive opportunity. It’s not just I believe that our strategy to scale, using both live facilitation as well as digital content is also will help us get there. So I’m very, very excited to hold this big vision. I absolutely believe that it’s possible.

Charity Matters: How has this journey changed you?

Tanuka Gordon: Absolutely. My own practice  of mindfulness has helped me through the mud and the chaos.  I know with faith that it’s going to be okay.  Everything’s going to work out exactly as it’s meant to in a purposeful way.

CHARITY MATTERS.

 

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

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Childrens' Causes

Welcome to Season 4!

Welcome to Season 4 of the Charity Matters Podcast. We are thrilled to continue bringing the best humans on earth to share their journeys in service to others. So grateful for your continued belief in good.

Since we are at that crazy time of year when summer blends into back to school we thought today’s guest would be the perfect person to launch our new season. Natalie Silverstein is a nonprofit founder and the author of a new book inspiring the next generation of philanthropist. We are thrilled to have her share her journey in philanthropy and in raising philanthropic children.

Join us for a terrific conversation about her journey starting a nonprofit for Parkinsons to writing a book to inspire others to serve.  Natalie is pure sunshine in a bottle and just what we need to get inspired for a new school year. More importantly, her new book, Simple Acts: The Busy Teen’s Guide to Making a Difference is inspiration for the entire family.

 

Here are a few highlights from our conversation:

 

Charity Matters: Growing up did you have a philanthropic family?

Natalie Silverstein: My parents were immigrants from Ukraine, they actually met in a displaced persons camp, which is what we would call a refugee camp today. They both came over to the United States after the war, in 1949, and they married in 1950.  I’m a first generation American, I’m very much a Ukrainian American.

As immigrants without very much education,  they gave back to their church. They gave to other Ukrainians who were coming over to get settled. They very much volunteered and participated by giving so much to their church community because that was really foundational for them.

Charity Matters: Tell us about the journey from growing up to starting a nonprofit?

Natalie Silverstein: I think I always wanted to do something where I was helping people. So as I was coming up through high school and into college, I decided to study health policy and administration. I wanted to work in a healthcare environment where I could help people. After getting my Masters Degree, I had a 15 year career in health care, hospitals and managed care companies. That sort of thing was sort of foundational to this other work that I’m doing. 

I decided to stay home and focus on raising my kids and all of that. And at some point in those years, this work of becoming sort of an expert/resource for people who want to do service in their community  really started to develop. Then simultaneously, we found out that my young husband was diagnosed with Parkinson’s disease.

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

Natalie Silverstein: My husband has a particularly unique sort of genetic form of Parkinson’s. He said to me, “You know what, I have all of these friends in research and in science and in venture capital, I think we should start a foundation.”  I have a background in running health care companies and I worked for nonprofits  which was sort of a funny synergy. You know, it was sort of like two people that had this terrible thing happen. Yet, we decided to turn that around and try and make something positive out of it. So we founded this foundation for Parkinson’s with GBA, The Silverstein Foundation. Our mission is to fund research to find a cure for Parkinsons but more specifically for Parkinson’s with GBA. 

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

Natalie Silverstein: Since March of 2017, we have made 35 research grants being made through partnerships with biotech and pharmaceutical companies to find a cure for this disease. My husband had worked in healthcare venture capital,  mostly focused on funding companies that were doing research into rare diseases. He could have taken this news and just feel sad but we also became sort of energized.

We said, “If there’s a solution to be had, if we can accelerate research into finding a cure, why would we not do that?”  There are so many of these stories where people are faced with this very, very difficult news. They could turn that inward, and they could get sad and feel sorry for themselves. Or you could turn it outward and say, “What small thing what, what kind of legacy might I leave, if I could move the needle, even a couple of inches?”

Charity Matters: How did you go from nonprofit founder to Author?

Natalie Silverstein: Let’s just be really honest, life is what happens while you’re making other plans. When my kids were little and I’m here trying like hell to raise them to be grateful, grounded empathetic kind people. At the end of the day, that’s the most important thing that we can do as parents. I was desperate to find opportunities to volunteer in our community. We live in New York City.  So I was just flabbergasted that there weren’t a lot of nonprofits that were welcoming us with open arms.

 I decided to figure out a way to create a database or a listing or something to help families like mine. And I partnered with an organization called Doing Good Together. They’re based in Minneapolis. I reached out to the founder and said,  “I’m flabbergasted that I can’t find opportunities here in New York City. Just like a straight listing of places that would accept us. And I want to start doing that.”

She said, ” I’ve been dreaming of sort of franchising this idea and sending, Doing Good Together branches all over the country, and you would be the first. So sometimes, there are no coincidences.  I launched the first regional branch of Doing Good Together.  I’ve been doing that for nine or 10 years, and I curate a listing of family friendly volunteer opportunities, that is pushed out to subscribe 1000s of subscribers every single month. It’s how I learned about organizations and volunteer work that we can do in the five boroughs of Manhattan of New York.

So I said to myself after I became this lady in my community, this kind of free resource. “Hmm, seems like there’s a book here”. If you look out in the world of literature of parenting guides and things, there really aren’t very many. I did a little competitive analysis and I’ve always been a writer. So, I put together a proposal and somebody bought it. The first book kind of magically happened in 2019. Now my second book, Simple Acts: A Busy Teen’s Guide to Making a Difference.

Charity Matters: What do you hope your book accomplishes?

Natalie Silverstein: I hope that we can teach the importance of service to the next generation. There’s so much research around this that it is kind of staggering. We know that volunteers live longer, they are happier, they are less depressed and they are more connected. Young people who volunteer are more likely to stay in school.  They’re more likely to do well academically and  they’re less likely to engage in risky behaviors.

Young people who volunteer with friends are more likely to continue to want to do that. Young people, children and young adults who volunteer with their families are more likely to do that, as adults with their families.  We also know that when you do something nice for another person, even if that person doesn’t acknowledge it, or doesn’t know that it’s you, you get an endorphin rush. There is literally an adrenaline endorphin rush, it is similar to a runner’s high. They call it the helpers high, and it’s a real, physiological experience.

I don’t know why we wouldn’t want to give that gift to our children, and to our teens. Particularly right now, in terms of social isolation. Volunteering is a real way to connect with other people to look a person in the eye and have a conversation and learn about their life experience. It gives kids a worldview. It is just so vitally, vitally important. I can’t I can’t stress enough the benefits.  I don’t think there are any downsides.

Charity Matters: How has this journey changed you?

Natalie Silverstein: I think that I have a lot more gratitude for my life. Certainly, and I appreciate so much the work that people do. You know, I’m also part of a couple of giving circles one here in New York City called the Impact 100. NYC which is a women’s giving circle.  I am just blown away by the nonprofit’s that come to us with grant applications. We get to review and  visit and then we give out one or two transformational grants of $100,000 each.

Over and over and you see this through your work on this podcast, that a person has a dream a person has an idea a person has a passion, something they’re concerned about something that has impacted them personally. Then they say what can I do to help?  Somehow, they just make it happen on a shoestring with no money and no resources and no place.  Regularly,  I am blown away  by the nonprofits that I have met through the giving circle, through my work with Doing Good Together, through my research from my books and through the organizations that we’ve personally gotten involved with as a family. When I look at these nonprofits that I’ve learned about over these years of doing this work, they give me hope.

 

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

Natalie Silverstein: You know, you mentioned earlier, we’re living in a really tough time. It is a very, very sad, sad world that we’re living in and so much that feels very helpless and hopeless. And you think to yourself, “What can I possibly do to affect any change and make this any better? ” 

 I hope if I can inspire even one teenager to say, “You know what, there is something I can do.  I can’t change the whole world. But maybe there is one person that I can help today.”  That could impact that person’s whole day, their week or their life.  I just want people to know that they can do that, we call can.

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.

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Cancer

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 Wagonhurst: Claire 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.

 

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Charity Matters Inspiration

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:
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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:
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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.

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Episode 40: Girls Leading Girls

These days when the world thinks of soccer Ted Lasso comes to mind. The loveable soccer coach from TV.  Today’s conversation is equally inspiring because that is exactly what our guest, Bre Russell does, coach soccer and SO much more!  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 join us for Episode 40 of our podcast! It truly makes me so happy sharing these incredible conversations.

 

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.

For example, there’s one girl, I’ll say her name is Melinda, not her actual name. She was not having great experiences at other organizations that were soccer-focused. She’s a very talented athlete and she took a year off from playing because she was not thriving on these other teams. Her friend who was playing with us encouraged her to join our organization, which she did.  I felt an instant connection with her because we had similar backgrounds.  Her family was just trying to survive, she was often having to take care of and be responsible for her younger siblings at a young age. And she didn’t have a lot of resources or support.

I would pick her up and take her to practice.  For the last two years, she improved so much in her soccer skills, and in her leadership, and she was awarded goalie of the year.  Today, she’s now a paid coach for us and she’s playing soccer at SF City College.  I just made it my job to support her and see her through this and be her mentor. Obviously, I can’t do that for all the 700 Girls we serve but I can model it and be an example. So other coaches want to do it too.

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.

 

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Episode 39:West Coast Sports Associates

Spring 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 for 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?

Mikee Gottlieb: It’s not like a lot of other charities out there, which are all great.  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.

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Episode 37: Empty Frames Initiative

Online dating happened well after I was married. Swiping left or right is completely foreign to me. However, when someone suggested I go to Podmatch to look for podcast matches I was intrigued. I am incredibly lucky that our guests always land in my path organically, the old-fashioned way. Curios,  I completed my profile to be a podcast guest and to find them.  Imagine my surprise when I received the sweetest note from today’s guest, Miriam Cobb the founder of the nonprofit Empty Frames Initiative.

The Empty Frames Initiative is a nonprofit organization whose mission is to empower orphaned and vulnerable youth as they transition out of state foster care by providing community, training in life skills and counseling. Join us today to meet Miriam and learn about the beautiful work she is doing to help our young adults as they age out of the Foster Care System.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Empty Frame Initiative does?

Miriam Cobb: What we like to do is empower orphaned and vulnerable youth as they transition out of state care. We do this by providing training and life skills, community, and counseling. We’re working with youth who are coming out of the foster care system and that can happen between ages 18 and 21. 

 

Charity Matters: Tell us about your name?

Miriam Cobb: When I was originally pitching the idea of this nonprofit, I was with a group of entrepreneurs. They asked, “What is something you would really love to do?” I replied that I would really love to photograph adoptions.  Many of these orphans don’t have a lot of baby pictures.  I wanted to honor their story, and there’s this synonymous idea of your picture being on the wall, meaning that you’re part of someone’s life and family. And it’s important. That was something that was really important to me. After I pitched this idea, the entrepreneurs in the room, decided they only liked the name.

Charity Matters: What was the moment you knew you needed to act and start The Empty Frames Initiative?

Miriam Cobb:  After crying. from the entrepreneur’s comments there was this other piece of this that I hadn’t really considered. The more I dug into it, the more this image kept coming back to my mind. I had served with an organization in Eastern Europe. While I was over there, I saw these really old, abandoned Soviet buildings that are just completely empty in the middle of nowhere, not being used.

I thought that seemed so strange because organizations could use the space. The person I was with said, “No, it’s just abandoned.”  I asked, “Well, are they gonna at least tear it down?” It like stuck with me for some reason. There was this merging of ideas of these places that people saw no value in? That these children were these big, empty frames that could be filled with purpose.

 

Charity Matters: What are your biggest challenges?

Miriam Cobb:  There are challenges. And it mirrors life.  There’s an up and down cycle for each nonprofit and you have those really great moments, then you have those moments that just feel like it’s a down cycle. Some of the challenges that I feel personally that have been kind of hard is learning how to really equip volunteers and provide them with meaningful roles. 

It’s an entrepreneurial venture and this life isn’t for everyone. When you pitch what you’re doing, there are so many wonderful and well-meaning people who want to be involved. And  I need people on the board. I think perhaps my age was the negative factor was trying to figure out how to really equip volunteers. Really learning how to manage volunteer roles and make it something that’s worthwhile to them. Because this is something that should be a beneficial experience that builds on your life too.

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

Miriam Cobb: Personally, my faith does play a major role in this. It does. It’s absolutely what I’m called to do as a person.  To walk away from it is to walk away from something that I’ve been shown on purpose.  Trials and setbacks are challenging, but there’s this really wonderful motivation knowing that this is what you’re called to do. That’s how I feel about it. I’ve been really, really fortunate to have a family that supports me while I do this work that helps me with that load you’re talking about. I wouldn’t have been able to do it without my family’s support and my community’s support. Ultimately, the answer to that question really is, God. That’s what I feel I feel completely called. This is what I meant to do. 

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

Miriam Cobb: The big dream is taking our program throughout the US and then internationally. Equipping communities to have multiple sites that are serving these youth.  I think if more people knew about what would happen when these young adults aged out, we would have more people stepping into the role beforehand to be parents, mentors, and give a sense of community.

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

Miriam Cobb: Life comes in seasons. As much as we’d like to kind of bypass some, they all build on each other. Each one gets us to the right place. 

Charity Matters: How has this journey changed you?

Miriam Cobb:  There are things that it hasn’t changed. It has not changed my personality.  I’m not a really extroverted person but I’m not scared to talk to people.  I’m not shy, I’m quiet. There’s a difference. So I’ve been talking to more people and it has stretched me in ways that I wasn’t really expecting.

Building on that same thought from before about the seasons, I had some really specific plans for my life. I was like, this is gonna work just like this and then it didn’t.  Working towards something that I feel passionate about really changes the way that those things happen. You know, it’s like what it felt like to be complete. Derailment gets put into a different perspective of walking in your purpose. 

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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Episode 34: Saving Tiny Hearts

February is heart month. Heart disease kills over 659,000 people in the United alone each year. In addition to that 40,000 children will be born with congenital heart disease (CHD) this year alone. When Francie Paul’s son Joshua was born with CHD she and her husband Brian decided to make a positive impact for their child and so many others. They founded the nonprofit Saving Tiny Hearts. A nonprofit organization that is determined to put an end to Congenital Heart Disease, which is the number one birth defect of children

Francie was one of my very first interviews over a decade ago and her story and work have continued to inspire me. I recently had a chance to reconnect with Francie and her board chair Dr. Larry Kluge to discuss the incredible work Saving Tiny Hearts is doing. If ever there were two humans with huge hearts to mend all the broken ones it’s Francie and Larry.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Saving Tiny Hearts does?

Larry Kluge: Every day, we’re looking to raise as much money as we can to fund as much research as we can. Nearly every dollar we raise goes to support research. Recognizing how important it is that difference in raising money for research makes in the lives of children. We’ve already found that that was the case, in terms of many of the projects that we have funded have actually changed and improved the lives of children born with congenital heart defects. This is what Saving Tiny Hearts does.

Charity Matters: What was the moment you knew you needed to act and start  Saving Tiny Hearts?

Francie Paul:  On August 11, 2005, we had our first child, a beautiful baby boy named Joshua Bennett Paul. My pregnancy was “normal” and the doctors reported nothing “remarkable” about it.  Four hours after his birth, Joshua was rushed from the local hospital to Children’s Memorial Hospital in Chicago. Joshua was diagnosed with Severe Complex Congenital Heart Disease.

Like many parents in the same situation, we became very angry and considered litigation as a course of action. After meeting with high-profile medical malpractice attorneys, we decided this course of action was not for us. In the elevator on the way out of the attorney’s office, we called Brian’s corporate attorney to find out how to start a public charity. We wanted to channel our energy into something positive instead of negative.  On September 1, 2006, the United States Internal Revenue Service officially recognized the Saving tiny Hearts Society as a tax-exempt 501(c)(3) organization

Charity Matters: What are your biggest challenges?

Francie Paul: Our challenges.  I have a good friend who said it’s her first instinct not to talk about it. And I always say, if we don’t talk about it, the world won’t know that our kids need help. Right?  They cannot yet fix what Joshua has. So I need medicine to catch up faster than what we’re doing.  I wish people knew that the research we fund could save their aunt’s life,  their mother’s life, and could save their life

 Joshua’s heart surgeries are a direct result of ongoing research. There are not yet adult survivors that have had his heart surgery versions. So like every year is a blessing and every year is also a race against the clock for me. I feel like I could shout to the world and say, “Everybody if you knew how much of your money directly goes to the scientists that our medical advisory board decides?” They only pick what is most worthy for Saving Tiny Hearts grants.  If people knew that their money went to actually change the world, by changing medicine and science. How remarkable the future could be.

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

Larry Kluge: Our motivation remains the same year after year, month after month, day after day, as we struggle to get the word out and raise those urgently needed funds to support more and more research that will ultimately save the lives of children born with CHD.  Our work has just begun and will continue until we can eradicate CHD.

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

Francie Paul:  I can but I can share a quick story about a boy. His name was Gray. He collapsed on a hockey rink, and from sudden cardiac death. And it just so happens that one of Joshua’s CV surgery nurses was there. So she ran and people were trying to do CPR. She said,” Call 911 Get me the AED.” She did CPR on him using the AED and saved his life.

We had Gray come to our gala and it happened to be his high school homecoming, so he brought his date. Gray got up there at our gala and said, “You know, I’m one in a million kids this happens to.”  That night we also had a doctor come up whose research we funded. And the doctor said to Gray, ” You’re not one in a million. This happens more than you realize. But I’m coming up with a study that will prevent it from happening to kids just like you.” 

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

Larry Kluge: Success is continuing since 2006 on our mission to fund life-saving research.  Sixteen years have gone by and we are still here committed to raising funds to support life-saving research.  Our Medical Advisory Board continues to review and evaluate all the grants that we receive year after year and determines which ones are most worthy of our funding efforts.  We have raised over 6 million dollars and funded 60 research projects.  Many of the research projects funded have already made a difference in the lives of children born with CHD.  Not only children but today after funding the development of a heart in a lab, an adult has received the first heart transplant from a pig which stemmed from research we have funded.

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

Francie Paul: To eradicate CHD.  To have a world filled with healthy children never to be born again and suffer from CHD.  Live long and healthy lives without fear or restrictions.

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

Francie Paul:  It’s been a humbling journey. And I think, through those moments of heartache, you see the goodness in people.  I think you see the goodness and the true heart and passion in people.  When somebody raises money for research for us, and my baby was given a chance… And I can only dream about what the future will be like because of everybody’s helping everybody.  Really when everyone comes together it is just the best. And just, I feel like the best is yet to come. And for lack of a better way of saying it, I only dream for it to only be bigger and better.

Charity Matters: How has this journey changed you?

Larry Kluge: Recognizing how fortunate we are and how we can be of help to others is what we strive for day after day. My personal commitment is to make a difference in someone’s life every day.  To put a smile on a child’s face, to make someone laugh, or just bring some cheer and hope to another individual is what life is all about.  Making a difference.

CHARITY MATTERS.

 

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

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Bisous for Léo

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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Cancer

Episode 25: The BumbleBee Foundation

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

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

Here are a few highlights from our conversation:

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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

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