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Autism

Episode 66: You, Me and Neurodiversity

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

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

 

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

CHARITY MATTERS.

 

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

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Episode 65: Curiosity 2 Create

The world gets scarier each week. You are here to be reminded of all of the goodness that exists all around us. These days teachers and educators are being vilified and under extreme microscopes as our world becomes more polarizing each day. Today’s guest is a bright light in a dark world, as she strives to invigorate and inspire thousands of educators to rediscover their love of teaching, inspire and foster creativity and critical thinking in the classroom and ultimately help our children.

Join us today for an inspirational conversation with Katie Trowbridge, the founder of Curiosity 2 Create. A nonprofit that is on a mission to help our teachers and ultimately our students. Their mission is to equip K-12 educators with the skills needed to embrace their innate curiosity and encourage critical thinking by providing leading edge resources for our teachers.  Like Charity Matters, Katie is on a mission to help the helpers. If you have a student, know a teacher or care about education in our country you are not going to want to miss this conversation.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what CURIOSITY 2 Create does?

Katie Trowbridge: It’s amazing what we do. And as we work with the teachers, and that the educators, administrators to help build in and infuse creative thinking, critical thinking into existing curriculum.  A lot of teachers today have very scripted lessons that they have to teach or they have an outline that they need to teach. And they think  I can’t put any creativity into that. And yet, there’s so many possibilities and ways that we can use what you’re already doing in your classroom to promote that way of thinking.

If you look at any of the research right now they’re all saying that out of the top ten skills that people need to be successful in the future. One is critical thinking and two is critical thinking. We’re in the schools and our teachers don’t really know how to teach these skills.  I keep hearing I don’t know how.  So we really are passionate about helping teachers make sure that when their kids leave the classroom, they’re thinking about things.

Charity Matters: What was the moment you knew you needed to act and start Curiosity 2 Create?

Katie Trowbridge: So Curiosity 2 Create is only about two years old. So we’re still babies.  We have been working in education for a while after school programs. But about a year ago, I was at a board meeting and someone said, “You know what would be really great is if instead of just having these after school programs, we really reach out to teachers.  Because if you can impact one teacher, you’re impacting 1000s of students.” And that’s when they looked at me and said, “Great, do you want to run that?”  And now this is my full time working in a nonprofit.

It was a big decision for me to make this move and I thought about it a lot, obviously. I love teaching, it’s in my heart. Over the last couple years, not only was I not happy but my coworkers weren’t happy.  My students weren’t happy and there was the lack of engagement, the lack of thinking for themselves. This idea of just give me the A. What’s the right answer?

  I saw that this excitement that used to be in schools of curiosity was just disappearing. Sometimes you can’t get the kind of coaching that you need on a teacher’s salary.  A lot of schools don’t have the money that they could to put into this kind of development. So I went to the Driscoll Foundation and they were very gracious and giving me a grant to make sure that this is able to be offered to everyone.

So no matter what, what size district, no matter where you are we can help. I was at a conference speaking, and a woman came up to me and said, “I’m in the middle of Nevada, and I teach, four different subjects, we have a really tiny school, could you help us?” And I said, “Absolutely.”

Charity Matters: Did you grow up in a family that was involved in their community? 

Katie Trowbridge:  I was a pastor’s kid and I was an only child. So if I wanted a youth group in the school in the church that we were currently ministering in, I would have to create it. My dad would go into these churches that were dying, and he would raise it up and make it work. And then he’d leave. So a lot of times, as a kid, I was like, wow, I want a youth group, there is none. So I’ll just start my own.

Then I’ve always worked with teenagers and had a passion for teenagers and for children. I was in marketing for a while and went in to get my teaching degree. A couple of schools wanted to start looking more at character traits, or SEL before it was SEL and so I started a nonprofit called Kids Matter. And that is still going. I always want to be helping and doing things when I was young to make sure people are happy and getting along.

Charity Matters: What are your biggest challenges?

Katie Trowbridge: I would absolutely say fundraising. I would also say that raising awareness since we’re a new nonprofit. For example, on Giving Tuesday, we thought, Oh, we’re just gonna flood social media and on Giving Tuesday, we’re gonna get all this money. And it didn’t work. Because we’re new, and we’re middle and people are giving huge organizations not just like us. So I think raising awareness is a big one. Once people understand what we do and believe in what we do. They absolutely will be more willing to invest in what we do.

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

Katie Trowbridge: Getting your mind off of everybody’s you. I was sitting here,  thinking oh, man, what do I need to do next this week? I’ve got to make sure that my staff is okay. Then I have to make sure that I’m helping change education. That’s a huge goal.

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

Katie Trowbridge: One of our challenges is how to measure something that takes years to measure. We are measuring our impact by giving the testimonials saying look at this teacher said that this has absolutely changed the way she envisions teaching in your classroom. Another teacher who said, “My classroom is so much more fun. So I enjoy teaching much more.”

Well, how do you measure that? Right? That’s awesome. So maybe that teacher was going to quit, which we know a lot of teachers are right now and now they found joy, through teaching creatively and critically. You know, putting in a graph for a donor to see is nearly impossible. I think  that’s part of when you talked about some of the challenges.  Part of the challenge is how do we have the data to prove that this is working, besides stories from our teachers who say that it is.

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

Katie Trowbridge:  I think one of my biggest lessons that I’ve learned is patience.  I want to go go go as a visionary as an implementer. I want I want to be speaking at all these districts I want to have my curriculum all over the place.  I want it now.  So patience has been a real life lesson for me lately. I also think asking for help, has been something that I’ve learned.

I think that that is a major life lesson that I’ve learned that I can’t control everything. And a little bit of chaos is a good thing, because that’s where some of the the learning really takes place. But you know, being patient has been a really big one for me.

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

Katie Trowbridge:  My biggest dream is that students and teachers and schools start seeing the importance of these soft skills and see them more as essential skills. So it’s not just the Common Core standards,  but it’s how do we get kids to start thinking. A huge win for me is when we hear from teachers saying, my kids are actually asking better questions. My kids are actually thinking, because they’re excited about what they’re learning.  So my dream is that we’re writing the curriculum across the nation and that people start really embracing the the way to think for themselves.

What a better way to solve social issues, but then being a creative and critical problem solver. So when we have these issues in our society, our kids know how to think for themselves and how to solve these problems. 

CHARITY MATTERS.

 

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

Copyright © 2023 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Episode 63: Girls for a Change

A few months ago when I was in DC, a friend introduced me to a terrific philanthropist. He in turn introduced me to today’s guest, Angela Patton. Friends connecting friends is simply THE best! Angela Patton is a remarkable human who wanted to help her community, more specifically the girls in her community. What began as giving two weeks of her vacation to start a camp for girls is now twenty years later a movement with her nonprofit Girls for A Change.

Join us today, for a motivational and inspiring conversation about passion, resilience and what happens when we lift others up. Angela is sunshine in a bottle and making the world better one girl at a time. This is the perfect episode for a summer day and the best way for us to wrap up Season Five of our podcast, so enjoy!

 

Here are a few highlights from our conversation:

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

Angela Patton: Girls for a Change is a nonprofit organization based in Richmond, Virginia. We prepare black girls for the world and the world for black girls. That just means that we visualize a world where black girls are seen, heard and celebrated. We are always working towards affirming black girls.  That means, making sure that we stand in the gaps that they face as early as third grade until their secondary years in academics. Sometimes their secondary years in their careers. What we tend to find out is that a girl stopped young. As they grow into womanhood, those doors still tend to slam in their face because of their color, because they’re young women. And so again, we close those gaps that they face, by  providing opportunities, programs, services, as well as social change advocacy work.

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

Angela Patton:  I was working for another nonprofit, and really enjoyed my work. But I consistently saw that girls were not fully participating, or they didn’t feel like they could. They were uncomfortable using their voice. I didn’t know how to start a nonprofit. I just I just knew how to do programs. So I decided that I was going to use my vacation time from the nonprofit organization I was working with, and just do a small two week camp for girls.

I just wanted to teach them how to work in the garden, to play sports and to find their sacred space. And, I called up a friend and asked, “Can I use your house? ” I had no idea like what I was doing. But I knew something had to be done. Because I could also hear community having conversations about what black girls were doing and not doing and it was always negative. And I wanted to tell them that that wasn’t true. They just didn’t have opportunity.

So I did this first year of a two week camp and a nonprofit leader in the community said,” Angela, you know you’re doing nonprofit work?” She told me how to start a 501 C3, how to get a board and she walked me through a journey. That was very scary. But I knew that if I really wanted to make true impact with my community that I was the best one to do this work.  So I leaned into it and that’s how I kind of got started.

Charity Matters: What are your biggest challenges?

Angela Patton: Well, one of the challenges was that I was young. Next year, our organization will be 20 years old, I was a much younger woman. So people don’t believe in you when you’re young. But one thing about startups, whether it’s a for profit or nonprofit, we’re always solving problems. You know, I actually don’t like that I have to do the work that I’m called to do all the time, because it is challenging. Also being a black woman saying that I am intentional about supporting and advancing black girls. That was considered offensive and being a troublemaker in South, especially in Richmond, VA  twenty years ago.

You’re black, and a woman, and you don’t know what it means to run a business. Definitely a nonprofit. And you also don’t have access to people with money. So you can not sustain this nonprofit. There also comes challenges dealing with the community that you want to partner with as well. So because of these challenges you know, it made me wake up every day with strength to continue to fight the challenges of the people who did not see their worth.

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

Angela Patton: For me, I’ve been very fortunate. And I shared this with other nonprofit leaders that I have coached in the past, is that you gotta find your village. Because in order for me to be able to go out and pay it forward, I have to take care of myself. I had to make sure I am healthy; mind, body, and spirit first. This includes who is my village, who are the people who know when I may need to call them to talk about what’s going on with the nonprofit and how they can support me.

So those are the things that I kind of pull from our fruit tree that keeps me alive. I feed myself with that almost on a daily basis. I’m reminding myself of my why acknowledging that I have great people beside me.  I’m so fortunate and that’s why I can continue to show up for girls the way that I do every day.

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

Angela Patton:  When the girls discover who they are. When they come back to us and say, I am happy with these
decisions. I have discovered who I am and I have clarity. And I am so clear about the fact that clarity is the key for us. So when I have girls find themselves despite what’s kind of going on. And my girls have all of the skills, the strength, the compassion, the awareness, to block all of that foolishness, and they come in to share their story with me is how I evaluate it.

She had she get it because there is no school, there is no field trip that makes someone just say I get it now. It’s their own lived experiences, and how much they take in and when they truly make the decision that this is going to be what gives them joy. Because all that we can do is give them access and exposure and opportunity. At the end of the day, it is up to her to say her yes or no. And that means she is clear. And when you say that, you know what a role model that that can be to the girls. That is it.

When I even share with them how I started the organization, why I started, my story, my journey. One of the things that I’m clear about saying to them is that I’m clear about why I’m here with you all. I’m not a person who applied for job or a person who’s waiting to do something else.  I received a calling to do this work. And one day you’re going to receive that call as well.. That doesn’t mean it’s a nonprofit, maybe you will be an athlete. It’s whatever that is for you.  When you are happy and joyous in that, no one can say, or do anything different, that can make you change that. And if you do change it is because once again, that’s what gave you joy. 

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

Angela Patton: . The one that comes to me today is the lesson I’m really excited about being able to pay it forward in the high school, in particular that I graduated from. I didn’t have the most rewarding or exciting school years.  I remembered when I was called to speak at the school that I graduated from, I really hesitated.  And I didn’t even realize that I was having like a moment of anxiety and I’ve had a TED talk. 

I went in, and I spoke to the girls. The children shared with me some of their experiences in the school and it saddened me, because it was 20 years later and experiences were the same. Even though the school looked different, it still was some of the same stories. I was just blown away.

So I ended up making sure that Girls for A  Change had a presence in the school.  I felt it was my responsibility and  I felt that I was put in this space purposefully.  Now, I have won a grant to do work specifically in that school and so I’m really excited about that experience. As we know, systems are hard to break. Even when new people come with new ideas, it doesn’t happen overnight. So it has to be people that go in and say these experiential learning opportunities have to be put in place.

My uncle was one of the first black students to enter that school after segregation, he was that first class. I realized because someone came before me, that I stand on the shoulders of  others who made it easy for me to be able to walk into the same school.  Today, that same school now gets me excited about being there. What’s really, really crazy about being able to do this work is that my daughter is now at that school in ninth grade. I’ve heard my girls say, thank you for making it net so hard for me. And so the question around with what lessons I learned, is go back and face your fears. Understand that you can help make it easier and less challenging, and create a new experience, that’s a lot happier for someone else.

CHARITY MATTERS.

 

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

Copyright © 2023 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Happy 12th Birthday Charity Matters!

Twelve years ago I had a dream. For someone who sleeps through earthquakes and their own children crying it was extremely in usual to be woken up in the middle of the night by a dream. This was one of those dreams that was so real that you felt as if you watch the scene from your life. It was unlike any dream I had ever had before. The dream was to tell the stories amazing humans who make the world better. The dream was Charity Matters.

I remember it so clearly, I literally got out of bed, found paper and pen and wrote it all down. The next day I told my husband that I think I’m supposed to be starting something. He replied,” That’s great! What are you going to start?” I replied, I was going to start blog and a website that told and empowering stories about real life heroes. His response,” A website? You can barely operate a computer.  Are you sure this is the right direction?”

His comments were valid. Technology and I were barely friends in July of 2011. That is the truth. Since I had just walked away from running a nonprofit my skills were a little rusty at best. Building a website by myself, which I did was an enormous challenge. Knowing where to go for help, how to start finding my heroes and all of it was more than a little daunting. In reality, what did I have to lose? Nothing. What did I have to gain? The ability to leave the world better than I found it. To connect people to causes that matter. Helping the helpers and creating an upward spiral of kindness and goodness. There was no option but forward.

Today, 12 years later I still feel the same way. I continue to have technological challenges. However, the risk versus reward definitely points in favor of reward. Rewarding is exactly the word for this 12 year milestone. Charity Matters has been more than rewarding. Its hard to believe that we have had almost 2,000 posts, hundreds of nonprofit interviews  and over 60 Podcast interviews. We have met remarkable humans from all walks of life. Learned so much about resilience, kindness, compassion and the human spirit.

Each person we have met has been an incredible gift and privilege. They have trusted us with their story, shared openly and honestly the huge challenges of this work. More than that, each nonprofit founder lifts us up. Reminds us who we can be and shows us the best of humanity. To all of the nonprofit founders who have shared, thank you. To all of you who listen and read this each week, thank you. You bless me and this work and propel it forward. My gratitude has no words.

So here is to onward and upward! My birthday wish is for Charity Matters to continue to grow and spread. So if you feel like giving us a gift this year, tell a friend, share a post that inspired you. That is how we collectively change the world. One small action, one story, one person at a time. Thank you for changing mine.

Happy Birthday CHARITY MATTERS!

 

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

Copyright © 2023 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Causes

Episode 62: Mitchell Thorp Foundation

There is nothing better than meeting a total stranger and feeling like you could be old friends. That is exactly the warmth and graciousness that today’s guest Beth Thorp brought to this week’s conversation. Beth is a ray of sunshine who shares her incredible story of loss and purpose.

It is always challenging talking to parents who have lost a child.  Beth and her family have taken their loss and turned it into incredible support for families whose children suffer from life threatening illness with their organization the Mitchell Thorp Foundation. Join us today for an uplifting, inspirational conversation of love, family, faith and purpose.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Mitchell Thorp Foundation does?

Beth Thorp: We are a public 501 C3  organization and we support families with children with life threatening illnesses, diseases and disorders by providing financial emotional resource support to them.  The foundation is in honor of my son’s name. That’s why it’s titled Mitchell Thorp Foundation. His name was Mitchell. He was my firstborn son and beautiful young man. A 4.0 students who loved to play baseball. He was known for that and his father played the Dodger organization at one point before he succumb to an injury. We are a little nuts when it comes to baseball season around here.

 

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

Beth Thorp: My son at the age of 13, came home from school with very severe headaches.  As any parent, you think maybe you’re coming down with the flu or something. So you do next indicated thing, give him a pain reliever go lay down. As days went on, he kind of got a little better, and then went back to school, but the couldn’t concentrate with  head pain. Until one day he came home and he just kind of collapsed in the front yard, which just totally frightened me.

 I’m  crying out to my husband come quick, something is seriously wrong.  We go to the doctor, and then it was really a rude awakening to our medical system. We checked off the boxes going to the doctors, and then it gets worse than he ends up in the hospital.. At his first hospital stay, he was there for three days running tests and things kept coming back negative normal. So then you’re trusting the doctors going down this path. Fast forward we had a five year journey of chasing pain, chasing trying to find a diagnosis and doctors scratching their heads trying to figure out what it was. It was a season of chaos, fear and anxiety and all those emotions that were watching your child suffer.

 This was also a  season of testing your faith.  We all go through it at some point in time in our lives, where the rug gets pulled out from underneath us, and things change on a dime. And you’re not expecting it at all. Where is your strong foundation? Because if you don’t have one, you’re going to crumble. We’ve seen so many people who fall into situations like us.  Statistically  close to 75% of families end up  in divorce or separation because the stresses of dealing with a medically critical ill child or a child with severe disabilities.

In 2008, a story ended up in the Union Tribune, about our family.  People really wanted to help us and they created a walkathon to help us pay off our huge medical bills that we had even with great insurance.  That experience totally changed us and humbled us and it really was also in my deepest pain and grief from losing our son.

As the faithful woman,  I heard something deep within my spirit resonate.   I knew it had to been God’s speaking to me because he said, “This is not the end, this is the beginning.” And I just sat up in my bed looked up or the heavenlies and said, “Oh, this feels like the end. What do you mean? What do you mean by that?”

So I’m looking up there and asking where did that thought come from? Why would I think that? Where would that have come from? That same week, my husband was at the local church and there was two boys he coached in baseball.  Both boys unfortunately had cancer.  Again, families trying to make ends meet and he really had that strong calling. He thought, we should form a foundation to help many families going through what we went through. So he comes home to tell me that.  And I said, “You want to do what?” Then I really had to realize, Oh my goodness maybe that’s what he meant by that this is not the end, this is the beginning.

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

Beth Thorp: It takes so much drive and that entrepreneurial spirit to make this work happen. The perseverance you really have to have is strong. And for us, it was a God given vision that we could not let go. This vision was driving us forward, like a steam engine.

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

Beth Thorp: We’ve actually given back over $3 million already back into the community. So that’s like, oh, wow, we’ve helped 1000 plus people and children and counting.  That’s a huge!  We just started with one child and one family at a time. And that’s how it started. And you just kind of kept one foot in front of the other.  Seeing these families scared out of their minds and just being that light in the dark for them is is huge for us. But yeah, the impact was huge.

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

Beth Thorp: I thought about that question and the big dream. Well, the beautiful thing was since the release of the book, my publisher now put me in touch with two film producers, who are we are writing a screenplay. Yay! We wanted to take the organization worldwide, because right now we’re just California based. We we want to build different chapters throughout the United States.

We do see ourselves what we call scaling up for that and we’re getting ready for that.  And we’re in the midst of taking it and the book into an adaptation into script. So we’ll see what happens? That would be my my dream. To see it on film, the story out to those who need to hear it, to see it.  And that’s going to be an inspirational story.

Charity Matters: How has this journey changed you?

Beth Thorp: I think what changed me the most is learning that I have no control over anything. If you think about it, we really don’t have control over anything. Especially my type of personality, we want to control and make things work the way it should work.  So the big lesson was surrender.

I keep having to surrender every day. It’s not my will, but his.  And when you can learn to do that it’s a beautiful thing to see how people come into your life, serendipitously. Those divine appointments, keep surprising me. So that is the one thing that has changed me, giving up the control and keep surrendering. 

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

Beth Thorp: There’s a lot of lessons that I had to learn. Well, I think for me was to stay strong in my faith, because faith doesn’t always take you out of problem. They’ve taken you through it. Faith doesn’t always take away the pain but its going to give you the ability to get through it. And then faith doesn’t always calm the storms of life but it gets you through the storms. So it’s really for me, it was just hanging on. I’m like a cat with the claws when I felt like I wasn’t hanging on. But just staying strong in that and to just persevere and never give up.

CHARITY MATTERS.

 

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

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Episode 61 : Dignity Defense Institute

It’s been a minute since we have put out a new episode of Charity Matters and it’s hard to believe we are already at Episode 61! Thank you to all our amazing subscribers and listeners. It is so fun meeting new people and telling their stories. More than that, learning what interesting ways people are changing the world.

Today’s guest, Nicole Smith is the founder of the Dignity Defense Institute, a nonprofit that is setting out to educate humanity on human value. Their mission is to become an amplifying force for the defense of human dignity.  Join as Nicole shares her story about working on the PR side of human crisis and how that work and the birth of her daughter inspired her to use her voice to help create change.

 

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Dignity Defense Institute does?

Nicole Smith:  Our primary focus is on educating on the foundation of human value. In order to transform culture so that the offenses that we see within cultures across the world, typically is found within this idea that we can measure human value by another criteria other than simply being human. So if we were to educate culture on the inherent value of the human person, we change the course of offenses against the human person. 

We base our organization around action committees. So these Action Committee committees are in all the different what we call symptom industries. So trafficking, disability community, orange culture, drug culture, those are different,  fronts to the human person, they’re all really interconnected.

Charity Matters: Did you grow up in a philanthropic family?

Nicole Smith:  Yes, my father by trade was an entrepreneur and inventor. But by service, they were youth ministers that founded churches across the US. So I grew up with a lot of at risk youth in our home. My mom was a counselor for Judo, juvenile detention center for girls in our community. So exposure to a world beyond just four walls of a home that was very instrumental in forming what I would do in the future.

Charity Matters: What was the moment you knew you needed to act and start Dignity Defense Institute?

Nicole Smith: I got an undergraduate in political science and a master’s in law and public public policy. With the intention of going forth being an attorney in the public space. I ended up sort of landing on the communication side of the public policy world. It wasn’t intentional, but I graduated during the recession and attorneys were a dime a dozen. So I sort of took a different track.

 I had a job at a constitutional law firm controlling their communication, and we called it the court of public opinion. We had a lot of affiliates across the world, in which we would advocate on their behalf of different cases. For example, it could be a child bride of Uganda, or a sex slave of Afghanistan. We did a lot of cases of imprisonment in prison. Religious minorities, Turkey, Sudan, like Iran, we did a lot of different varying cases. 

I was going into places in the world in which justice wasn’t often seen. So if you were going to go into Iran, justice is not what you would come out of the court systems finding. So we would go to the court of public opinion, we had one of the cases where  he was a joint American Iranian citizen, but we advocate on his behalf. We got over a million signatures on his behalf, Obama included him on his Iranian deal.

 In January of 2020,  I got to DC to sort of launch this concept with a group of individuals. It was interesting to watch the world at that time. By consequence, I was pregnant with my second little daughter. And she would be born in distress and sustained brain injury during that process. And she now has cerebral palsy as a result.

I mentioned her birth because I say it’s when the mission was given flesh and bone.  So I had to help these little girls across the world, and I could never hug them, I could never give them a kiss and say they were special, like they deserved. But now I could do that to my own daughter. 

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

Nicole Smith: I call it the short term and the long term goals.  You have to be focused on that short term, because that’s the climax, the shift and perspective of the impact for that individual. And then to be patient enough for what that long term goal is beyond it is really important.  It takes time to change culture and it’s not going to just be overnight. So we have to look at those metrics, and internally of the impact that we’re having. I say the epiphany point is where the individual that you  speak to gets it.  I can’t tell you the rewarding feature of that, where the light goes on their eyes. 

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

Nicole Smith:  Increase our reach obviously. We want to have a greater reach within our communities so that we can really creatively educate through stories and thought provoking ideas of questions. That’s the big dream is just the growth and influence because that’s how we educate people. We want to have more of those stories of victory with  people that have had their climax moment. And they’re on the other side of it and they’re living their new normal.

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

Nicole Smith: The funny thing is my 10 plus year career has been around nonprofits and nonprofit leaders and nonprofit volunteers. But it’s a different perspective. When you’re on the other side of that it.  I’ve grown millions of dollars and donor money. But I’ve never been on the other initiating part of that journey where I’ve always built amplified off of a starting point. And to take responsibility for that has been just really very challenging. We’re still a new organization, we’re still running and there’s been more delays and I ever wanted to because my daughter is my priority. There is victory in those lessons that I can’t and would never want to take back.  Even if this didn’t grow into this massive idea that just changed the face of our world. I can’t take back the lessons that I learned and I’m a different person because of it.

CHARITY MATTERS.

 

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

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Speaking of Impact

I hope you all are having a great weekend. We don’t usually publish our post on Sunday’s but our site was down for a little work. The unexpected break gave us a little time to get out of town to celebrate another lap around the sun. With LA’s June gloom, finding some sun was in order too!

Before I get the celebration going, I wanted to share a fun conversation I had a few weeks back with Bob De Pasquale as a guest on his Speaking of Impact Podcast. Bob is a great guy whose podcast focuses on interviewing leaders who use their gifts to make the world a better place. He lives a purpose driven life and was really fun to talk too. It was a terrific conversation so if you have time over the weekend please take a listen here.

At the age of 18, Bob  found himself in a fight for his life when diagnosed with cancer. It would become a journey that ultimately shaped his view of himself and the gifts that he could share with the world. His podcast Speaking of Impact is an empowering and educational show that helps people to recognize their time, and gifts  that bring joy and fulfillment not only to themselves, but to the world around them.

Last week’s conversation with Dana Bouton has continued to stay with me, as powerful conversations often do. Like Bob, Dana really left such an indelible mark on me with how she is choosing to spend her remaining time on this earth. While Dana might have more clarity on her timeline, most of do not. As a result, we waste so much precious time. Both conversations with Bob and Dana are reminders to use our gifts and time to make a difference.

As this weekend marks another trip around the sun, the gift that Dana and Bob have given each of us is to ask how are we living our best lives and impacting others? I am grateful for my health, the time I have with those I love, the opportunity for a little adventure and most of all the privilege it is to connect amazing people to incredible causes. I will continue to try my hardest to be a joyful messenger of service and to hopefully inspire a few people along the way to do the same.

Wishing you all a fantastic weekend. Please know how grateful I am for this incredible community of kind and good humans.

 

Charity Matters

 
The best way to be a part of making a difference is sharing good news. YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER. If you enjoyed today’s episode. 
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Episode 58: 410 Bridge

Kurt Kandler’s story is one of resilience, passion, and dedication to improving the lives of those less fortunate. His organization, 410 Bridge, has faced numerous challenges in its mission to provide aid and support to communities in Africa. But despite these obstacles, Kurt’s unwavering commitment to the cause has led to tangible changes and a glimmer of hope in the lives of those who have been forgotten by society.

410 Bridge began as a humble effort by Kurt to make a difference. After a trip to Africa, Kurt was struck by the poverty  he saw in the communities he visited. He knew he had to do something to help. And so, 410 Bridge was born, with the mission to provide aid, education, and healthcare to those in need.

Join us today to meet Kurt Kandler, the founder of 410 Bridge. I’m so excited to share our incredible conversation about taking on one of life’s greatest challenges, global poverty. I think you will be inspired, educated and fascinated about one man’s unexpected journey.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what 410 Bridge Does does?

Kurt Kandler: We exist because we believe we have to redefine this war on poverty. We have to redefine not only the war on poverty, but what it really means to win it what it means for the people living in extreme poverty. And we have to redefine, you know how we fight this battle together. That’s our that’s kind of our why statement.

What we do is holistic community development in rural communities in the developing world. We’re in four countries. Today we’re in Kenya and Uganda, Haiti and Guatemala. Essentially, what we do is we adopt and walk alongside an entire community and entire rural community of anywhere from 1000 to 10,000 people.  We walk with them over a number of years, helping them with all areas of need, and ultimately getting them to a place where they can graduate from a relationship or partnership with 410 bridge. And they can continue their journey of development long after we leave. So we are a holistic, all areas of need community development organization.

Charity Matters: What was the moment you knew you needed to act and start 410 Bridge?

Kurt Kandler:  I’ve always been pretty entrepreneurial in my career. And then right after 911, the business that I had at the time failed.  That was a very difficult time for our family.  It was our dark times and what happened in those times that changed everything.

Our kids were going to a small private school here in Atlanta. They were presented with this opportunity in Uganda. The kids in the school were sending shoeboxes full of toys and school supplies.  A family went over there to take these school boxes to Uganda.  They came back and I was looking at pictures of their trip.

I came across a photo of a school building that was made out of mud, sticks, cow dung and dirt floors. Kids sat on rocks and there was no teachers. And I just was fascinated by this idea that they had to repack the walls of this school building every time it rained.  It just captured me and  captured my heart. I decided what I’m going to do is I’m going to go over there and I’m going to go build them a brick building. 

We went over there to build this brick building school block. And we did that.  I thought, what we were coming over here to make a generational impact. We had raising money for a school building, for a water project, textbooks and all of that. In my view, it wasn’t solving a problem. 

I just was captured by the real problems that contributed to extreme poverty. It’s my first exposure to extreme poverty. And I had more questions certainly than answers. But I came back and had became a bit of a student and read a lot about it. And I found very early on that there was a lot written about the problem and why it existed.

 I really felt compelled and I had an idea of how to go execute on that. Which is really crazy, because it is a big, complicated problem, a huge problem. And I felt like what if we could focus on a place? Rally go deep into that place for an extended period of time? Could we move the needle in that place and really begin to solve this poverty problem for that place?

Charity Matters: What are your biggest challenges?

Kurt Kandler: We started in in Kenya. So we were very focused on three communities at the very beginning. Two of those communities ultimately graduated, one of them did not.  I understood that we were going to rise and fall on solid leadership. And so we needed we needed leadership inside our communities, of Kenyans in the community, leading the community toward this self development objective that we were undertaking.

And because we were holistic, it’s all areas of need its water, education, health and economic empowerment. There are spiritual aspects to what we do, that are super fundamentally important. And so we had to undertake all of that. My philosophy has always been in times of difficulty, confusion, chaos, disagreement, just do the next right thing.  It means you know what the next right thing is, it could be a big thing. It could be a small thing more often than not, it’s a really small thing, but take that next step. Because it’s small, incremental steps toward a goal that get you there. It’s not one giant step all the time. And so that’s what we did.

We were trying to solve one little problem after another and started with leadership and then staff over there. I’m a firm believer in 100% indigenous staff. We want Kenyans helping Kenyans, Guatemalans, helping Guatemalans.  So that’s how it began. And I think though you asked about the challenges I think the biggest challenge that I learned very early on was that we couldn’t be successful. And we still can’t be successful in the communities where we work without support from the west. But we also can’t be successful in that work until we change the paradigm of how the West engages the poor. Because we more often do more harm than good. Engaging the global poor, we have been a little ethnocentric about the problem. 

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

Kurt Kandler:  I think that there’s some things that make what we do a little bit easier, in that we don’t carry the burden of our communities. The communities where we work in are struggling in extreme poverty. This is this is less than $2 per day per household kind of level. So it’s really heartbreaking. But there is a there’s a difference between relief, rehabilitation and development.

 How do you define partnership and development? We define it as that which people do for themselves. So we’re a development organization. We’re not a relief organization. So we are very clear when we come into the community and talk to leaders and we are here to do with you. And so your job is to mobilize and unify your community around this development effort that we’re going to walk with you.

So that eliminates a tremendous amount of this emotional burden that we feel that we have to go solve problems for people that that, because they can’t solve it themselves. We don’t believe that the poor are a set of problems to be solved, we believe the poor are the solution to their poverty problem. And we’ve seen that manifests itself successfully so many times. It’s amazing.

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

Kurt Kandler: When we think about impact, our ultimate goal with a community is to work ourselves out of a job as quickly as we can. This is a very long term walk that we walk with the community. I was in a community last week,  that will graduate will be our 13th graduating community. We’ve been walking with them for 12 to 13 years. So it’s a long time. But we’re moving them we’re trying to move communities toward graduation.

Well, what does it mean to graduate? In order to graduate, we have to reach certain outcomes. With the leaders in the community, we outline outcomes that they want to see happen. And before we begin, we decide that we finished with water when we finished with education. When we finished with economic empowerment, what are the outcomes we’re looking for? What I want to know is is this program that we’re running in this community going to achieve the outcome that we set that the leaders of the community set forth?

So if you think about household income, an outcome for us is we want to move people from whatever they’re making today, call it sub $2 a day to $12 per day. So they have choices that they can make about their their quality of life. We set up outcomes. And as we start achieving those outcomes, and we get to maybe 80% of the outcomes achieved, we’ll start teeing up and introducing the idea of graduation to the leaders. Probably within a year or two, they will end up graduating have a huge celebration in the community.

A huge celebration at the end of this year with that community and partners and donors will come and the whole community will come out. And we’ll celebrate not what we did. But we’re gonna celebrate what the community has done on their own because we don’t measure our success by what we do. We measure our success by what the community does on its own. And when they do that, it is amazing to see people have this aha moment that say we will never go back to being poor again. 

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

Kurt Kandler: I don’t think that our dream is to continue to add communities until all of a sudden, we’re in thousands of communities around the world. What I my dream really is for other organizations, working with the poor, to think a lot more critically, about what they’re doing and how they’re helping. And if 410 Bridge can be an example of a model that works. It’s not the only model. But it’s a distinctive model. So my dream is to scale it through other organizations, looking to adopt a better methodology of engaging the poor.

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

Kurt Kandler:  Well, if we’re going to solve this poverty problem, we better define it well.. So with poverty, we don’t define poverty as a material problem. We define it as an issue of worldview. How people think, and this word worldview gets often misunderstood. So we are always trying to help people think differently about their quality of life, their perspective.

And when you can help people shift their worldview they’ll do more to solve their poverty problem and continue their journey of development without you than they will with you. I’m all about this idea of worldview driving choices that we make.  And so, that’s a that’s a big, big life lesson for me.

Charity Matters: How has this journey changed you?

Kurt Kandler:  I’ve become way more humble. And I think there’s nothing that will humble you more than working in extreme poverty environments. I mean, it’s a humbling experience. My wife  told me the other day, she said, “You know, you are you are way more purpose driven in your leadership than emotionally driven.” I think that all sounds pretty good.

CHARITY MATTERS.

 

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

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Episode 57: Mission Launch

Did you know one in three Americans have an arrest or conviction record? That means almost 80 million Americans today have an arrest or conviction rate. Today’s guest is no stranger to these numbers, she is actually part of that statistic. Since April is Second Chance month there seems to be no better time to talk about new beginnings than today.

Join us to learn the incredible story of one woman’s journey from prison to nonprofit founder. Teresa Hodge is an absolute inspiration. Learn about Teresa’s tireless work to help those who have been incarcerated rebuild their lives with her organization Mission Launch.

 

Here are a few highlights from our conversation:

 

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

Teresa Hodge: Mission Launch is focused on helping the men and women who have arrest or conviction records get back on their feet. The reentry process is where we focus. Reentry is that period of time right after they come in contact with the legal system. It is when they’re just trying to get back on their feet and reintegrate back into society. We  focus on helping people with jobs, housing and getting into higher education. 

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

Teresa Hodge: One of my dad’s favorite statements was when life gives you lemons make lemonade. I was an entrepreneur and  part of a group of other entrepreneurs. The company we founded was investigated by the government. From the moment the company was investigated, my life just drastically changed. I spent about five or six years, fighting the charges. When I went to trial, I knew very little about our criminal legal system.  I went to trial and  lost.  As a result of that, I was given an 87 month federal prison sentence or seven years and three months. I was the first person in my family to be charged and I was heartbroken and devastated. 

I just knew that there had to be meaning and a greater purpose. In hindsight, it was as if all seeds have been planted. One of those seeds was  how was I going to use my time in prison? When I looked at the time, I said, “God, when I come out, what I’m going to know the most about?  What will be the most relevant from going to prison?” 

It was about 10 days after I was convicted, that I began writing a version of the work that I’m doing now.  I had experienced about five years of fighting on the front side. I was scared to death, quite frankly. Seven months felt like a life sentence, but seven years, three months was unimaginable. So it was just a really difficult time. What I knew was that if I could survive it, that I was going to bring good out of it.

The reality is I actually had to endure the long journey of incarceration. That was the lemon and it was a long time sucking on those sour lemons. I was already as an entrepreneur and knew how to write business plans.  As you know,  I was a part of a captive audience in prison. So I was able to ask questions and do market research.  I watched women leave prison and then I watched come back.  Why would someone return? I didn’t understand and was baffled.  

The thought is prison is supposed to do some level of correcting while people are incarcerated.  And yet, when people return, there’s often no pathway back. While I was sitting in prison I just felt like I’m going to create the pathway that I need to go back. And I’m going to bring all of those experiences and all those stories into my design so that we create enough pathways for people who were trying their best. 

I came home in 2012 and we started Mission Launch in 2012.

Charity Matters: What are your biggest challenges?

Teresa Hodge:  The challenges were I was underfunded. I knew a lot about prison but I knew nothing about a nonprofit. We were new entity and were unknown. And we had this huge vision for how we could disrupt and change and make life and society better for all of us. In the end, I had the ability to stick to something. And so and to learn and to evolve and to grow,  I’ve been able to navigate to a good place. 

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

Teresa Hodge: We measure Deep Impact, the stories and the people that we can talk about.  I can tell you a story of a young man who came into our hackathon just a few days after being home from prison, and he just had lots of potential. He didn’t want to work at McDonald’s and he had the ability to do something different. And he was inspired to start a business and struggled to start the business. Long story short, today, he runs a National Cooperative. He now hires other formerly incarcerated people. That idea and  the ability to build that was birthed inside of a space that we hosted. I served on his board for a while. We validated him, incubated him and were his fiscal sponsor. So it’s that level of deep impact 

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

Teresa Hodge: I want to shorten the time it takes a person to come home and get back on their feet after incarceration.  The big dream is for us to have a national strategy with a localized approach. Reentry is hyperlocal. Right? The statistics are one in three Americans have an arrest or conviction record. That means over 70 million, almost 80 million Americans today have an arrest or conviction rate. It’s staggering and not a small number.

I am on a mission to normalize the fact that we have so many people in our country with an arrest or conviction record. If we normalize that as a fact, then we can move beyond the fact that a person has a record. Then we can create all the pathways of opportunities for 80 million people.

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

Teresa Hodge: I think the greatest life lesson is for me was in prison, when my life became smaller.  It’s had so much meaning when my life in prison was the great equalizer. When you think of one in three Americans who have an arrest or conviction record, prison is a microcosm of the United States. It’s a microcosm of society. It’s disproportionately black and brown. People who go to prison are gay and straight,  black, white, brown, yellow, Native American and all religions. In that moment, we all just wanted the same thing to endure and get back home.  I learned to be so accepting of so many people and cultures  that maybe I would not have been. So I think the greatest lesson is we’re just more alike than we are not.

Charity Matters: How has this journey changed you?

Teresa Hodge: I have and I am currently on a mission to restore some of the joy. I have been heads down doing this work for 11 years. So it’s changed me in the sense that I’m a workaholic and I’m too focused on it. Now I’m on a mission  to let up a little bit. You’ve done your part. It may or may not be fixed in your lifetime but you’re going to do your contribution. And that’s all you can do.

CHARITY MATTERS.

 

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

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Episode 56: Start Lighthouse

What happens when one person answers a call? In this situation, the call was to an elementary school teacher from a concerned parent about their child. Join us to learn about what one teacher has done to inspire 5700 children to learn to read and love learning.

There is a reason and a story behind today’s guest, Rina Madhani’s mission to inspire literacy in thousands of underserved children. Join us for an incredible conversation and see why Rina was a L’Oreal Women of Worth. She is a bright light!

 

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Start Lighthouse does?

Rina Madhani: Start Lighthouse is committed to addressing the literacy crisis within our community. The reality is that thousands of students are growing up illiterate in our city, or state and our nation. Zooming into the Bronx in particular, which is one of the poorest congressional districts in the entire country, 70% of students are still reading below grade level.

What Start Lighthouse does is we build robust home libraries with brand new multicultural books. We host nationally recognized award winning authors and artists so that students can see the process of creating a story. And we also rehabilitate abandoned defunct library spaces within title one public schools. We then convert them into full time literacy centers where we provide high quality literacy programming. It is also a safe space for students to gather during the day after school and throughout the summer.

Charity Matters: Did you grow up in a philanthropic family?

Rina Madhani:  My parents would allocate like weekends where we would volunteer together as a family. That was really important to my parents. It was something that they prioritized, because that was a way to always bring the family together.  I think that’s really also shaped me as an individual today, because I do believe that we’re products of our environments.

Charity Matters: What were your early memories of giving back?

Rina Madhani: As a child, I was always interested in social impact in particular.  I just remember traveling back home to India, and just trying to understand why there was disparities that existed between social classes.  And wondering why the government wasn’t doing enough to address those gaps?  That was something that I also saw back home here in the States.

When I was younger, I was always thinking about how can I make a difference in the community? Even in high school, I created my own organization where it was bringing my peers together for us to be talking about issues that were affecting the world. We talked about Haiti, learned about micro financing,  created school supply kits back for children in Iraq during the Iraqi war. So those things were always in my mind.

Charity Matters: What was the moment you knew you needed to act and Begin Start Lighthouse?

Rina Madhani:  I remember when the pandemic started to unfold, and we really had no certainty what was taking place. Then suddenly, schools and libraries closed. Certain districts struggled to get tech devices for students that needed them in low income communities. I was in the Bronx, and a lot of my students and their families were reaching out to me asking me for additional materials and resources.  When I spoke to one of my student’s parents she said, “I don’t want him to continue to fall further behind. And I’m particularly worried about his reading ability.”

That phone call inspired me to get Start Lighthouse off the ground.  It really began with just a modest goal of getting 500 brand new multicultural books in the hands of students. Creating learning materials, resources that they could leverage while they were back at home.  I started to mobilize individuals within my network.  I was cold emailing publishers reaching out to elected officials, talking to community members, inquiring about which schools were operating as meal distribution sites. Finding where were students and families gathering daily for hot meals.

 That phone call that I had with one of my student’s parents stated it all.  I realized that I have a call to answer for not only my students, but for the community.

Charity Matters: What are your biggest challenges?

Rina Madhani:  I think the most challenging part has been around fundraising. Early on, I didn’t realize how to actually go about fundraising. I had never formally pitched my organization and I didn’t have a theory of change model in place. So I didn’t know how to raise money for the work that I was doing.  I just thought I would just be going to schools and just giving our services and products just for free as they need it.

Then I realized that’s not going to be sustainable as an organization. So that’s where I had to pivot a bit and really think intentionally around how the organization was going to develop. A lot of the work has really entailed around relationship building and cultivating a community based approach. So involving not only administrators, superintendents, but also elected officials, community members, families and the work that we do. That’s really been a key aspect of it because that those are the folks that can really help mobilize resources and funding.

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

Rina Madhani: I think I’m just so fueled by the students and families that I have the privilege of interacting with every day. And the fact that our students now know things around like interacting with authors and artists. They’re able to verbalize the fact that they want to become authors or artists. The fact that they’ll tell me that they have a home library and that they know what those words mean. They can actually point to it and that fact that they come up and just tell me how much they love and enjoy reading. I think those are the moments that add up to me and really help fuel the work that I do. Because, for me, everything is rooted in community.  I want to be able just to support the next generation of readers, writers, and critical thinkers.

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

Rina Madhani: Our impact is now centered around us rehabilitating these defunct library spaces and converting them into full time literacy centers. That’s where I’ve seen just how impactful our work is. Because now we have the privilege and the opportunity to serve students every single day. So we are there during the day and after school. So now students are able to have access to our programming year round. With that, we are now able to study and unpack student reading proficiency data.

 We’re able to assess attendance levels to you in terms of the frequency of them coming to the literacy hub. Also ensuring that they’re in school because chronic absenteeism is a prevailing issue within our community. So now we have the opportunity to measure these items. Beyond just thinking about the 23,000 books that we’ve delivered and students that we’ve been able to work closely with. That’s where we’ve been able to see the true trajectory of our work. It’s just that we are able to join students as early as pre k to be able to follow them through their entire journey and ensure that they’re reading proficiently by fourth grade.

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

Rina Madhani: The big dream is to become a national organization. Right now we’re course based in the Bronx. But I always tell folks that we’ve got an ask for us to expand to Harlem and to Brooklyn. So, I envision us having a New York takeover. But then for us to be able to bring this all across the country through various chapters that exist.

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

Rina Madhani: I think, for me, the biggest thing has been around putting myself out there. Even if I do receive a no, that’s absolutely fine, because I will find someone else that will also want to champion our cause. And not to get too derailed by that because of course, I’ve received my own fair share of rejections. Along the way, even when I submit a grant proposal, maybe we’re not the right fit right now. But who’s to say and won’t come back again later and thinking that we could pursue when were maybe a bit more developed. So I think for me, that’s been the biggest thing is just not letting that derail me too much. Just to keep going and really just to find your champions. Once you’ve identified folks that truly believe in you and believe in the vision, hold on to those people because those are the relationships that will continue to carry you forward

Charity Matters: How has this journey changed you?

Rina Madhani: I think I’ve evolved tremendously. Since I’ve stepped into the shoes of becoming an entrepreneur, I feel so much more confident in terms of my ability to be in a room full of strangers and to be able to advocate for myself.  I think that when I was younger I was so much more introverted. And I always thought that like speaking out, wasn’t like the best way to like go about things. And now I have no problem doing that.

 I think I’ve just become so much more sure of who I am today. And I’m just so grateful, because this journey has allowed me to really step out of my comfort zone and have conversations with individuals that I never envisioned myself having a chat with before. Now that I have the opportunity to to share it share my story, it just reminded me that I also have something to say. 

CHARITY MATTERS.

 

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

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Causes

Episode 55: Grass Roots Grocery

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

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

 

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

Dan Zauderer: Funding is was a huge challenge.

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

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

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

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

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

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

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

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

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

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

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

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

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

CHARITY MATTERS.

 

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

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Cancer

Pablove

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

Here are some highlights from  our conversation:

Charity Matters: What was your background before starting Pablove?

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

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

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

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

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

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

Charity Matters: Where did you start?

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

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

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

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

Charity Matters: Tell us the success you have had?

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

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

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

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

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

charity Matters

 

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Causes

Episode 53: Hearts of Gold

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

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

 

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

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

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

When we lift one we lift all.

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

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

CHARITY MATTERS.

 

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

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Charity Matters Inspiration

Season Five Premier: Susan Axelrod CURE Epilepsy

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

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

 

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

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

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

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

photo via: Boston Globe

Charity Matters: What were some of your earlier challenges?

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

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

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

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

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

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

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

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

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

Everybody has some value and something to contribute.

CHARITY MATTERS.

 

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