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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:
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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.

 

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 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.

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 38: Foster the Mind

I never ceased to be amazed at the fascinating way nonprofit founders find me, or perhaps the ways I find them? A few months ago I was at a board meeting and was seated next to a new board member. We began talking about what she did and it came up that her husband Bryan had recently founded a nonprofit. She explained that Brian had a challenging upbringing and had struggled with depression. Through an incredible journey (worth listening to) Brian was introduced to neurofeedback.

The CDC has said that the economic fallout of mental health from COVID is two trillion dollars. Brian’s nonprofit, Foster the Mind helps children from the foster care system who struggle with trauma and mental health challenges from trauma. Join us for a fascinating conversation looking at mental health and the foster care system in a totally different way with our guest Bryan Butler. This conversation will most definitely open your mind!

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Foster The Mind does?

Brian Butler: We improve the lives of children and adolescents with mental health treatment, more specifically neurofeedback. Foster children have more trauma than most of our veterans if you study their brains. Neurofeedback which is an expensive therapy helps to alleviate that trauma.

So primarily we’re focusing on abuse and the foster youth population. Our model is we calm the brain down with something called alternating current stimulation.  It’s just a very light stimulation and a pulsed electromagnetic field therapy. So it basically forces the right-left hemisphere to alternate while you’re telling a story. And what that does, is it doesn’t erase the memory. Rather, it starts to remove the emotional impact that that specific memory has, it’s really powerful.

Oftentimes, there’s a lack of understanding in the mental health field of trauma and the impact it has. There’s a book called The Body Keeps the Score and so that’s actually what happens is there is a connection between the mind and the body. So you see these people, and they have just a slew of issues because their childhood trauma has never been addressed.

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

Brian Butler:  I grew up in a very chaotic home. When you have an environment like that, you don’t have a center intact. So I would be close to somebody and then push them away. They’re called deactivating strategies that your brain does to keep you safe.

In graduate school, one of my professors talked about how we minister of who we are. I had to write a paper on the topic. After he read it, he said, “This is really dark.” The professor wanted me to go see a therapist. And so I did and was given the diagnosis of major depressive disorder.

After that initial diagnosis, I spent 20 years and the current standard of care. I went to the psychiatrist and volunteered at church working with a lot of foster youth who were also struggling. Later on in life, you realize that you’re trying to find some meaning. So in saving them, you’re giving yourself meaning because I always felt worthless.

I tried to commit suicide. The week after,  I went to my professor and said, “Look, I am doing everything I’m supposed to do. I’m taking all the meds, exercising, praying, going to church, and doing it all. There’s gotta be something else because this is not working. And I’m going to kill myself because of the pain.” So he said, “Well, there’s a guy who has a clinic, Burleson, doing neurofeedback, I think you should try it. “

After I got much better, where I was treated, he offered me a job to come back to work at the clinic that treated me. When I got married and told my wife about what I wanted to do, she said, “Okay, let’s just do it.” She helped me put everything together. That was in 2018 we started Foster the Mind.

Charity Matters: What are your biggest challenges?

Brian Butler: A lot of people really don’t understand this work. So more than fundraising, I’m teaching people that there’s a better model for trauma, recovery, and trauma treatment. I have a split model because we have a clinic with paying customers and then we have a nonprofit where we work with children recommended by the court. Balancing both can be challenging.

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

Brian Butler: Yes, we do have successes, which is really, really exciting. It’s cool when people give us cards saying, thanks for changing my son’s life or daughter’s life.

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

Brian Butler:  I’ve got two or three patients now who were having panic attacks all day long. You can see it in the brain waves. Now they can have a conversation and not have panic attacks. And it’s just very miraculous. It feels very surreal. We see lots of people, but still every time it’s still amazing to me to see that happen.

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

Brian Butler: My dream is to create a home or a campus for kids that age out of foster care that has mental health treatment. A place that has an art studio and where they teach everything else that might be helpful for someone who isn’t going to go to school or college. These kids still want to find a home. Texas is one of the few places where when you turn 18, as a foster child they no longer support you or help.

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

Brian Butler: That no matter what you’ve experienced, no matter what you’ve been through, the brain can be rewired and changed. These challenges can become a strength as opposed to a downfall. That’s been my personal experience. So when I when someone comes to me, and they’re having panic attacks all day long every day.  I’m telling them my own story, my own journey.  I can see, I guess it’s part of my gift, and maybe I’m seeing my own self, but I can see three months from now where I think they can be.

Charity Matters: How has this journey changed you?

Brian Butler:  What’s been cool about my journey of healing, especially with Amanda, because she’s been absolutely amazing for me. I’ve never been married before and I’m just feeling a sense of peace. My wife’s big and talking about things that happen in seasons. So I hang on to that.  Because of my own story, I keep reminding myself of the whole seasons’ thing. I’m learning to enjoy the present moment and I’m grateful to actually have a family.  I never thought I would be a part of a family. So I really enjoy the connectedness and how grounded I am.

Now that I’ve started the nonprofit my vision has been able to change.  I get to keep sharing part of who I am and part of my story and then helping them realize the same thing. They’re the ones doing the work and I get to be around for part of it. My desire is for them not to suffer the way I suffered.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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A few ways to support Ukraine

The world is still in shock and awe from the past week’s events. It still seems surreal the human tragedy that we are watching unfold in Ukraine. Most of us feel incredibly helpless so today I thought we would share a few incredible vetted nonprofit resources that are working tirelessly to support the people of Ukraine. Any contribution to any of the below organizations will help.

Project Hope

You may remember my incredible conversation with the CEO of Project Hope, Rabih Tornay. Project Hope is a humanitarian relief organization founded in 1958. They currently have emergency teams in Europe sending medical supplies and health care for refugees. 87% of every dollar goes directly to providing care and hope for those in need. With Rabih at the helm of this organization, your donations are in the best of hands.

World Central Kitchen

World Central Kitchen was founded by Chef Jose  Andres in 2010 after the earthquake in Haiti. Chef Andres is already on the ground in Ukraine doing what he does best, feeding people. The World Central Kitchen has been providing meals to the hungry all over the world. As Chef Andres said,” Nothing sends a bigger message of hope than a humble plate of food. And that’s the only thing we know how to do.” 

Save The Children

Save the Children has been working in Ukraine since 2014. They estimate that out of Ukraine’s population of 44 million people there are currently 500,000 people displaced from their homes and 7.5 million children are in immediate danger. Save The Children is providing immediate aid such as food, water, hygiene kits, and cash assistance to protect children and families.

Global Giving

Eight years of conflict in Ukraine has taken a toll on the country. Global Giving has created a specific fund called the Ukraine Crisis Relief Fund. This fund and donations to it will support humanitarian assistance in impacted communities in Ukraine and surrounding regions where refugees have fled. The funds will provide shelter, food, clean water, economic assistance, and health care. They need your support to make this possible.

If we have realized anything in the past week it how small our world is. We have seen the best of humanity in the Ukrainian people coming together and the worst as bombs are launched. In these moments we all make choices on how to support one another. Thank you to all of you who do so so much to help another. We are grateful for you.

CHARITY MATTERS.

 

 

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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.

 

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Health

Having a heart

February is here and with it comes Valentine’s Day, Presidents Day, and of course heart month. In the past decade, we have talked to a number of organizations that focus on the heart. For good reason, one out of for deaths each year is from heart disease. The translation is that over 659,000 people die in the United alone each year from heart disease. These are not just statistics but real people. To visualize this number that is over six huge football stadiums full of people each year. One person every 36 seconds, not to mention the 40,000 children will be born with congenital heart disease this year. So what do we do when are our hearts are broken?

Luckily for us, there are a multitude of amazing organizations working tirelessly to solve and tend to this problem. I thought before the month jumped into high gear we could take a moment to revisit some of the great organizations we have met who are working to reduce those numbers. Some of these go back so far that I felt like I was looking at old friends, I hope you feel the same.

Hopeful Hearts Foundation

A decade ago we talked to the Chez family about their organization, The Hopeful Hearts Foundation. The Chez family had three children all born with Congenital Heart Disease. Tragically they lost their daughter Gracie suddenly at the age of three and created the Hopeful Hearts Foundation in 2008 to keep her memory alive and to help other children suffering from CHD.  The Hopeful Hearts Foundation supports families whose children have CHD and also raises funds to provide research for Congenital Heart Disease.

Camp Del Corazon

Some of you may remember Lisa Knight, a registered nurse and nonprofit founder of Camp Del Corazon. The camp is a place for children with heart-related health challenges to have fun, make friends and find fellow children going through similar health issues.

Lisa said, ”  I get so filled up by it all.  These kids have survived death, there are no camps for these types of kids due to their medical conditions. It transforms them. You see them show each other their scars. The most rewarding thing is when you hear children call you by your camp name when you see them years later not at camp.  This year our first camper is coming back as a counselor, so to see not only these children grow up and give back but to watch my own 29-year-old daughter getting even more involved as she takes on more responsibility with her role at Camp del Corazon, is so rewarding. “

Mended Hearts

In 2017, we talked to our friends the Page family about their experience with Congenital Heart Disease in our post The Heart of the Matter. In that conversation, we learned about Max Page’s support of the organization Mended Hearts. A nonprofit that was created in 1951 to give peer support to those dealing with heart disease. Dr. Harken asked four of the first four people to ever have open heart surgery to help others facing the same experience. In 2004, Mended Hearts realized that families with children suffering from CHD also needed that same peer-to-peer support and created Mended Little Hearts.

There are hundreds of organizations working tirelessly to do research to cure Congenital Heart Disease. These are just a few of the amazing people working to heal broken hearts. Next week we will continue our look back with Francie Paul from Saving Tiny Hearts in our podcast. I’m so excited to share our conversation about the incredible work she and her team have been doing to help find a cure. Until then, wishing you all a wonderful heart month full of love.

CHARITY MATTERS.

 

 

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Welcome to Season 3! Episode 32: Diveheart

Welcome to Season Three of the Charity Matters Podcast! We are so excited to introduce you to another incredible season filled with amazing heroes. Today’s guests are the perfect way to dive into this new season. As a lifelong recreational scuba diver, I know how scared I am every time I enter the water. So many things are out of my control, the fear of not being able to breathe followed by the peace, stillness, and beauty of the ocean. Overcoming that fear every time leaves me feeling recharged and accomplished. So when I heard about the nonprofit Diveheart.org that works with people with disabilities to live better lives, I knew they were the perfect organization to launch Season Three of our podcast. So let’s dive in!

We are so excited to introduce you to Jim Elliot the Founder of Diveheart.org and their Executive Director, Tinamarie Hernandez. Join us for a fun and inspirational conversation about what can happen with a positive can-do attitude, a scuba tank, a body of water, and a passion for making people’s lives better. You won’t want to miss this one!

Here are a few highlights from our conversation:

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

Tinamarie Hernandez: Diveheart is an organization that works with people with disabilities, physical and cognitive. We’re also a training agency for people who want to work safely with people with disabilities in the water. And we use scuba diving as a therapy.

So we start people in a pool, we get them to where they’re comfortable.  We see a lot of stuff, self-improvement in the people that we work with. They get the confidence and a renewed vigor of life. Some of the people we work with might have been in an accident. We also work with people who’ve dealt with their condition their entire life.

And it’s one of those moments where they’re like, I’m getting a win, this is a winning day for me. And that’s something I tell parents and family members, you know because they’re nervous. I guarantee your loved one is going to leave with a win today. They’re going to be proud of themselves for something. So that’s what we do, we don’t cure ailments. What we do is help people live a better life.

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

Jim Elliot: I’m a media guy by trade. I’m a journalist. I took diving because I thought if I ever meet someone like Jacques Cousteau, I better know how to scuba dive.  I had a burning desire to learn how to dive and fell in love with it. As you know, it’s a great equalizer. It’s like being an astronaut in inner space. It’s amazing.

So during the 80s, I was in the media business and helped startup a TV station. I was also on these nonprofit organizations’ boards. And in the mid-80s, I started guiding and teaching blind skiers because my eldest daughter is blind.  I saw how that helped people and said, “You know, you can only ski at certain times of the year in certain places in the world, but there’s a pool in every community. So what if I were to do what I’ve been doing for decades in skiing, and taking people out of wheelchairs and putting them in the water and having them fly, learn to be an astronaut.” And that was kind of the premise of the whole idea. That was 2001 that we incorporated and this is our 20th anniversary.

Charity Matters: What are your biggest challenges?

Tinamarie Hernandez: The challenges are to evolve and to keep our finger on the pulse of what is changing. As a nonprofit that needs help with funding, all of our pool programs are free. So we need people to give us  99% of the money that we need to help us run our programs.  It’s about getting the word out and letting them know that, yes, you’re giving us money so that we can help people in the pool because even though it’s free for them, it’s not always free for us.  So that’s a challenge to keep going. 

Jim Elliot: We have a documentary called TurningPpoint that was done and airs on PBS every now and then. And we had somebody from Southern California call us and say, “You know, my husband and I watched turning point last night and we cried, where do we send a cheque?” Five years later, that donation (knock on wood )has increased every year. We just make sure she knows everything, all the good stuff that we’re doing. So she knows that her investment or donation is going places.

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

Tinamarie Hernandez: We have one particular individual with who we’ve been working with her since she was three months past her very life-changing. accident.  She’s now a complete quadriplegic and was injured at 19. You don’t know what you’re going to do with your life at 19, right? But when we met her she was still in her anger phase, which is understandable. She was a very decorated athlete before this accident.

This last week, she announced that she is going to finish her degree. I can’t say Diveheart did all the work. We didn’t but we helped get her that spark. I know we did. She’s worked with us and her whole life has changed. She’s been inspiring people with disabilities to get certified. They’re like, well, wow, I didn’t want to get certified or get in the water until I saw her.

Seeing this young woman coming up out of the water with a smile on her face with her energy makes others think, ” Maybe I am missing out on something.” Those are the impact moments. I can’t measure that impact. That person’s life is better. I know and I hope we can reach as many people as we can. 

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

Jim Elliot: I think you hit the nail right on the head when you said ripple effect. Because what we do, and what’s really cool about what we do is that it can happen so fast.  The first pool session can be so powerful because it’s not natural to breathe underwater. It happens to everybody that puts their face in the water and breathes it off that tank. And it changes the way they think and the way they really experience life.

We like to do to say that we take the unrealized human potential, and we create a paradigm shift. So now it’s not Johnny in a wheelchair, it’s Johnny, the scuba diver. Then what we do is, once they have this new identity, we point them towards being a good steward of the environment.  You know, get into marine biology or just be a helper and do good in the world. Then we try to help them go in that direction. In turn, they inspire people around them, like you said, the ripple effect. And this girl that Tina was talking about. She came to us and said, “You changed my daughter’s life. Thank you so much. “

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

Jim Elliot: One of the things that keep us going and able to adapt is when we are hit with an obstacle.  We take lemons and make lemonade, basically. What action do we take, that’s going to really be meaningful at this moment? Where we can just stay with it and then persevere, take that obstacle and turn it around. And we’ve been successful doing that many times. As the book says, the obstacle is the way.

CHARITY MATTERS.

 

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

The Real Heroes of 2021

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

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

Love Not Lost Founder: Ashley Jones

Ashley Jones is the founder of Love Not Lost. Ashley shares her journey through grief with the loss of her young daughter and her transformational experience from loss to creating a remarkable organization that provides family photoshoots for the terminally ill. Her honesty and candor about grief are anything but sad.  You will leave this episode inspired by the joy and purpose found from an unbelievable loss.

The Bumble Bee Foundation Founder: Heather DonaTini

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

The Be Perfect Foundation Founder: Hal Hargrave Jr. 

I have been privileged to meet hundreds of truly amazing humans over the years. There are always a few that are so dynamic, charismatic, passionate, and wise that you can never forget them. One of those people is the remarkable Hal Hargrave. You may remember his story from a few years back. Hal was involved in a tragic accident that left him paralyzed fourteen years ago. He used that experience to serve others suffering paralysis with his nonprofit the Be Perfect Foundation. A conversation that is better than caffeine. If you have read Hal’s story and not heard his passion, you need to take a listen. Trust me, this will be a gift you give yourself today. The man is pure light and inspiration.

Pancreatic Cancer Action Network President and CEO: Julie Fleshman

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

Raise The Barr Foundation Co-Founder: Lori Barr

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

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

 

If you enjoyed today’s episodes, please connect with us:
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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:
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Episode 28: Pancreatic Cancer Action Network (PanCAN)

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

Charity Matters: What Have been your biggest challenges?

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

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

Julie with Patrick Swayze’s widow, Lisa Swayze

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

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

CHARITY MATTERS.

 

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

Breast Cancer Research Foundation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Charity Matters

 

 

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

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Causes

Episode 26: Love Not Lost

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

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

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

Charity Matters: Tell us what success you have had? 

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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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.

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