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Pick up the Six

Ten years ago when Charity Matters began there were not many people telling the stories of service. At that point in time, I didn’t think there were any. It turns out that across the country in Raleigh, North Carolina there was someone else who had a similar idea. His name is Brian Jodice and he is the creator of the Pick Up The Six Podcast.

Brian and I were recently connected and I learned about his work at Pick Up the Six. In the military, the  term
“six” refers to behind you. In a group of runners picking up the six means to turn around and get the person trailing behind you. Brian’s mission is service before self and he uses his platform to tell the stories of men and women from all walks of life doing just that. Last week, it was a privilege to be a guest on his podcast talking about service and just how good people are.

So today, I thought I would share our conversation above and introduce you all to a new audience of amazing humans who serve. Brian interviews everyone from police officers, first responders, community heroes, and occasionally nonprofit founders too. So if you get a minute, please take a few to check out his podcast Pick Up the Six here. As Brian and I discussed the more people like us who focus our attention on all the good happening in the world, the greater the positive spiral up will be. 

When we all come together and put service before self, we make the world a better place. One person, one podcast, one conversation at a time.

 

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.

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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:
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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Charity Matters Inspiration

The state of things

I know it has been a while since I have shared my thoughts. The podcast has been so well received that I haven’t stopped in a while to reflect on the state of things. I don’t know about you but turning on the news lately scares me. The state of things does not seem terrific these days. This is not a political statement but simply how I feel.

When there is war, there is fear. That fear can erode so much goodness. We lose faith in one another and distrust becomes a cancer that destroys connection. As humans, we are meant to be connected, to support one another like bees in a hive. We all have a job and a role to make our communities stronger by working together. Fear robs us all of the honey and the sweetness of feeling connected.

The pandemic did a lot to destroy connections and break down our hives. The election before that didn’t do our communities any favors either. We talk about our friends and families differently now because of their politics. Something that has never happened in my lifetime. Rather than coming together to discuss where we are similar, we write people off because they believe differently.

If bell curves are a real thing, and I believe they are then we are all actually in the middle together. Somehow, the media has us all playing tug of war at the bottom of those bell curves with CNN on one side and FOX on the other. We should be working together not pulling ourselves apart.

We are afraid. The thought of a nuclear war is seriously scary. We are nervous about gas prices, inflation, crime,  our safety and these are real and valid reasons. These fears are reasons to lean into the hive because we need each more than ever. The fear is an opportunity for each of us to help one another not pull away.

Last week at dinner with friends, our waiter asked us if we would be open to rounding our bill up to four dollars more because the restaurant was matching up to one million dollars for a nonprofit supporting Ukraine. We were splitting our bill three ways and asked if he could add fifty dollars apiece. The waiter got on his knees at table height and looked like he was going to cry and said, “Thank you.” I asked him where he was from and he replied, “Kyiv.” He told us his father and brother were fighting and his sister and mother were trapped and trying to get out. Our waiter was so touched by our little gesture and said, “Thank you for reminding me how good people are.”

He is right, people are good. We see it in the brave Ukrainians, in the Polish people’s generous welcome, and in the generosity of so many supporting the millions of refugees. When the state of things is bad, it is our time to rise up and be good. To help another, whether a neighbor a friend, or a stranger in Ukraine. It is the only way the state of things gets better when each of us becomes our best. When we come together we can all make life sweeter in our hives.

 

CHARITY MATTERS.

 

 

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

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

 

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Episode 36: Miracle Messages

I have had some pretty amazing conversations in the past ten years. Conversations that really make me think and look at the world around me in a totally different way. The conversation I had a few weeks back with Kevin Adler, the founder of Miracle Messages was game-changing for me. It’s my hope that it is for you as well. I will never look at the homeless the same after this eye-opening exchange.

Join us today, as Kevin shares the story of his uncle who lived on the streets and how his uncle’s death inspired the creation of Miracle Messages. A nonprofit that not only reconnects the homeless to their loved ones but also provides a social connection through a phone buddy system and provides cash for rent once the unhoused person is ready.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Miracle Messages does?

Kevin Adler: We help our unhoused neighbors rebuild their social support systems and financial security, primarily through family reunifications, a phone buddy system, and direct cash transfers.

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

Kevin Adler: This work begins really with my own family. I had an uncle, who was very beloved to me. Uncle Mark was his name and he suffered from schizophrenia. He lived on and off the streets of Santa Cruz for 30 years. One day I was in college and I got a phone call from my dad telling me that Uncle Mark was found deceased at a halfway house at the age of 50.

I was 19 at the time and had never thought about the life that Mark lived when he wasn’t at our Thanksgiving and Christmas dinner table. I never thought about the life he was living on the streets. It wasn’t until years later that I was in San Francisco, that I found myself walking by our neighbors experiencing homelessness. I said, Gosh, everyone I’m walking by that’s someone’s son or daughter, brother, sister. So it got me thinking, what would it look like to help neighbors experiencing homelessness, people like my Uncle Mark, maybe share their stories, the stories that I didn’t know.

It wasn’t trying to solve a problem and create an organization.  I started a side project storytelling project called The Homeless GoPro. For one year, I invited 24 individuals experiencing homelessness to wear wearable cameras around their chests and narrate their experience of what life is like. When I got the footage back I was just shocked by what I heard and saw. One quote really stood out. It was,” I never realized I was homeless when I lost my housing. Only when I lost my family and friends.”

Long story short, I approached everyone I saw who was experiencing homelessness and asked, “Do you have any loved ones you’d like to reconnect with?” That’s how I met a man named Jeffery. He told me he hadn’t seen his family in 12 years. Jeffery recorded a video with his niece and nephew, his sister, and his dad. I went home and I got on Facebook and found a Facebook group connected to his hometown. So I posted the video there and within one hour, that video got shared hundreds of times. It made the local news that night the leading story. Classmates started commenting, I went to high school with Jeffrey, I work in construction. Does he need a job? And in the first 20 minutes of the post, his sister got tagged. We got on the phone the next day and it turned out Jeffrey had been a missing person for 12 years.

The starting point of Miracle Messages was when Jeffrey reconnected with his family. I asked sister Jennifer, “This thing that seems to be bigger than just Jeffrey and your relationship. There seems there might be others, who are experiencing this issue. What should we call this, this initiative?” She said, “Well, we’re in this small town and people have referred to it the story as the miracle of Montoursville. And it’s Christmas, maybe it’s called the Miracle message.”

That’s the name and the vision from day one, which no one should go through homelessness alone. Hard to believe that was December 2014.

Charity Matters: What are your biggest challenges?

Kevin Adler: It’s always been a privilege to do this work, but it has not been without challenges. There was a point that I got down to $600 in my savings account doing this work in San Francisco and it wasn’t sustainable. As a person of faith, I prayed at times. The first prayer was, please let someone else steal this idea and run with it because I don’t know if I’m up for it.

I had to come to a realization a few years ago, that I could not make myself the first casualty of a good cause. I was en route to doing that and was just working nonstop.  The work left me feeling isolated and lonely. So for me, the beginning of being able to sustain this work in the tough times was by making sure my own foundation was in order.  You need to put your oxygen mask on first and if you don’t do that, you can’t be of service to others.

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

Kevin Adler: An impact is a person who’s experiencing homelessness, potentially getting off the streets. About 20% of the reunions lead to housing. Impact involves the cost savings that generates. When it costs us thousands of dollars compared to cities spending between $40,000 to $60,000 per unhoused person per year to maintain them on the streets for one year. The impact can be measured in the lives and the perspectives of the volunteers, who say, “I never knew I could do anything on the issue of homelessness, I felt a very low sense of personal efficacy in making an impact. But now I feel empowered.”

An impact can also be measured in the fact that we’ve received over 100 million views on our videos on Facebook. We’ve had over a million shares, and over 700 articles written about us. These all change the hearts and minds of people. When you see a video about a person experiencing homelessness, reconnecting with a loved one or being in a phone Buddy Program, or getting $500 a month towards rent then it changes your perspective.

So you know, we take impact seriously. I also think anyone who listens to their unhoused neighbors and or volunteers and has their heart or mind shifted or opened as a result, that’s an immeasurable impact that we’re very proud of as well.

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

Kevin Adler: For us, that dream is that no one goes through homelessness alone. I would love to end that sentence one word early. No one goes through homelessness.  I don’t need to dream bigger, to know how that’s not going to be happening in the next few years.

I have been around enough where I see five-year plans, we’re gonna have homelessness by this year. Those years have come and gone and the numbers are increasing, right? And it’s only getting worse.  So, I don’t think we’re ending homelessness anytime soon. What we can do in a step towards ending homelessness, is making sure every single human being…. all 550,000 people who go to bed every night and wake up in the morning, homeless without a stable home in this country in 2022… that they have at least one person, they’re connected to either a family member or friend social support and that they know they’re not going through it alone.

To me is something we are able to envision and realistically achieve through Miracle Messages with our partners on the ground. You know, and I think giving people money so that they can resolve the issues that are in front of them. People generally have the knowledge and wherewithal of what is best for them but they just aren’t given the agency. They are not afforded the same opportunities that we all expect in this country. So just giving people the financial support, they need to make ends meet, and the social support, they need to get through tough times and be celebrated at good times. That’s really what we’re committed to at Miracle Messages.

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

Kevin Adler: Hearing the stories of our volunteers and why they commit their time, why they donate and why they show up. I get so much joy and gratitude, just being able to give and be there for someone else. We can all envision bank accounts with a couple more zeros at the end of them. Once you’re at a certain, baseline level, what do you need? What else are you really lacking? I mean, how many more square feet do you need in your house? Who cares? So just being able to see the joy of doing good with the time that you have on this earth and helping others unleash the good that’s within their hearts that they just don’t know how to share. That’s, that’s really what drives it.

Charity Matters: How has this journey changed you?

Kevin Adler: My values are the same. What drives me as a person, my faith, and how I look at people have not changed.  I think I’ve grown a lot. I’ve realized that my story is about one story and the importance of really hearing other stories.  I’ve realized how much harder this work can be, but also how it’s so so important to keep the core foundation in mind to keep the perspective. So yes, I think I’ve grown a ton as a person. But I also think fundamentally, I’m still the precocious kid who was just comfortable walking around the neighborhood talking to my neighbors.

 

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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A little talk about founders

There is nothing I love more than talking about the amazing humans who start nonprofits, the founders. These very special humans are angels among us.  I was recently asked to be a guest on Nonprofit Radio with Tony Martignetti to talk about founders. Like all people who start businesses our nonprofit founders are some of the most incredible entrepreneurs. They run businesses that rely on the generosity and kindness of others. Not an easy business model for sure. Today, I thought I’d share both our conversation and a few highlights from it.

Common Traits of Nonprofit founders

Of the hundreds of people I have spoken with over the years, it is amazing how much they have in common. Every nonprofit founder I have interviewed never had a plan to be one. Something happened, a catalyst and a moment that changed the direction of their lives. That catalyst lead them to this work and altered the course of their life forever. Whatever happened to them or someone they love, that founder was determined it wasn’t going to happen to another human. That is the WHY to their work and how these remarkable people are so passionate about their cause.

Over time the founder and their cause can become one and the same. The founder’s life work and identity is in their nonprofit. This is the same for founders of regular businesses too. Think of Colonel Sanders and KFC or Martha Stewart where is the separation of church and state? It is often hard to know where one ends and the other begins. Like many small businesses across the country, there is very often not a succession plan.

When is it time to think about a succession plan?

No one ever wants to face their mortality. We all think we will live and work forever. However, that isn’t usually the case. Making a retirement plan and a succession plan is important for everyone. As my husband says, ” Everything you enter, except for a marriage, should have an exit strategy.” When do you know it’s time to exit the organization you founded?

  1. The organization stops growing or becomes flat.
  2. New people are not joining your mission or cause.
  3. You notice that innovation stops.
  4. The organization only looks to the founder for direction.
  5. When the founder and the organizations are one and the same.
  6. People support the founder and not the organization.
A few insights 

Every founder should have an exit strategy when they start the organization. If you don’t have one, it is never too late to start thinking about one. We all want to leave a legacy of goodness, regardless of our work. Nonprofit founders should begin thinking about what that legacy looks like. Their boards should engage in active succession conversations. Never wait until it’s too late. The WHY, the reason the nonprofit founder started this work is what needs to remain long after the founder is gone. The organization is the WHY and not the founder. Lastly, we can not lead unless we serve. Sometimes we just need to get out of our own ways to help those that we set out to help from the start.

 

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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Non-Profit Heroes

Winter Break

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

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

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

Charity Matters

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

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Charity Matters Inspiration

A Little Fear Come New Year

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

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

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

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

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

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

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

Charity Matters

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

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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:
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 31: Raise The Barr

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

Photo cred- Janae Johnson photography

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

 

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CHARITY MATTERS.

 

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

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Holidays and Holiday Giving

A Season of Giving

 

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

―H. Jackson Brown Jr.

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

Why We Give

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

Where to begin?

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

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

Make giving part of daily life

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

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

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

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

CHARITY MATTERS.

 

 

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

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Charity Matters Inspiration

Thankful this Thanksgiving

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

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

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

 

Charity Matters

 

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

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Causes

Bisous for Léo

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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

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Cancer

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.

 

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