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Welcome to Season 3! Episode 32: Diveheart

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

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

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

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

CHARITY MATTERS.

 

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

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

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Cancer

The Real Heroes of 2021

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

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

Love Not Lost Founder: Ashley Jones

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

The Bumble Bee Foundation Founder: Heather DonaTini

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

The Be Perfect Foundation Founder: Hal Hargrave Jr. 

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

Pancreatic Cancer Action Network President and CEO: Julie Fleshman

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

Raise The Barr Foundation Co-Founder: Lori Barr

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

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

 

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

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

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Episode 31: Raise The Barr

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

Photo cred- Janae Johnson photography

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

 

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CHARITY MATTERS.

 

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

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

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Bisous for Léo

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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

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Episode 29: Oath to Country Foundation

Today is Veterans Day. A day we honor those who served our country and sacrificed so much for our precious freedom. The story on today’s podcast is an incredible family legacy of service. Justin Gracieux uncovered old documents that showed his grandfather’s 14-year military service during World War II and beyond. However, the official military records of thousands of veterans were destroyed in a 1973 fire. The fire destroyed the major portion of records of Army military personnel for the period 1912 through 1959.  Join us to learn the incredible adventure one grandson has gone on to right a wrong and in the process honor those who have served our country.

Photo Credit: L for Louie the Lens (Monrovia, California)

Justin has founded the nonprofit organization Oath to Country Foundation to provide support for our Veterans. This inspirational conversation about family, love, and service brought me to tears more than once.  Justin’s story, commitment, and determination to serve those who have so bravely served us is an inspiration for us all. Take a listen.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Oath To Country Foundation does?

Justin Gracieux: Our mission is to foster a community of connectivity and collaboration with partnerships and volunteers to educate on advocate for and strengthen veterans, military, and first responders’ mental health.  We also provide street-side resources for our Veterans that end up homeless in Southern California. Oath to Country Foundation is also sponsoring combat veteran psychotherapy treatment sessions provided by a Board Certified Clinical site Colleges.

Photo Credit: L for Louie the Lens (Monrovia, California)

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

Justin Gracieux: The story begins during Covid. in September of 2019, I was at my parent’s house and my mom called me into her room.  She said, “Here’s a folder.”  It was an old vanilla envelope kind of thing. My mom said, ” Open it up and see what you want to do with this?”. So I opened it up. That’s where I found this letter written by my mom when she was 17.

To whom it may concern:

I hope that you can be of help, and refer me to anyone that will read this letter. My father, Joe B. Montoya, was born on June 23, 1927. He was a veteran with more than several honorable discharge certificates that I can remember. My father was a very hard worker and a good father to me. And that is why I’m here today, I vowed that I would have him a burial that he thought he was given. My father has been deceased since October of 1983. I’ll try and make a long story short, there was a fire and I know my father’s discharge paperwork was burned.  When I lost my dad, it was a promise to him to get a copy of his papers and have him a burial service with full honors along with being buried with the veterans of the United States. He now lives in a cemetery, with no one knowing his battle to serve our country.  There was no flag or knowledge of him in the service, with approximately 14 years of his life dedicated to this country. I need someone to help me find his past. My family tried, as long as we could to postpone his burial. And to find his service records.  Photos of him are enclosed.

My mom said, “I called Washington DC, and nobody could hear me cry for help.” So I took this folder, opened it up. I noticed that there was a lot of information that I could use to my advantage to step back into that arena that my mom did at such a young age, to fight for his veteran recognition, and 14 years of service. 

Photo credit: L for Louie the Lens (Monrovia, California)

So right around this time, I started interviewing friends and family members who served our country through multiple wars. I started conducting these interviews, to put together these stories. Because the story of my grandfather wasn’t accurately passed down through the generations, I felt as though it was my duty to pay it forward. I needed to tell and archive the stories of these Veterans.

  I remember meeting a gentleman who served in the Navy. Our conversation really opened my eyes to what motivated them to serve. The experiences they had, the fun experiences, and the traumatic experiences. I learned a lot about war and what it has done and what it does to our American soldiers. The PT, post-traumatic stress, depression, anxiety, isolation, and ultimately suicide. This really opened up my heart and my mind, to what it really means to serve. This was the foundation for The Oath to Country Foundation. Shortly thereafter, I filed the paperwork with the State of California in March to start our nonprofit and go full speed ahead. 

Photo Credit: L for Louie the Lens (Monrovia, California)

Charity Matters: What are your biggest challenges?

Justin Gracieux: I remember one night, and this is before it was officially filed. I remember praying, I was in bed.  All I could think about was the nonprofit how it’s gonna work.  I had a lot of self-doubt stepping, into this role.  I remember saying, “You know, God,  I’m coming to you because I’m scared. I’m nervous. I don’t I know I have a heart for this. I want to do it. But I don’t know how I’m going to do it. Because I never served.” And I said,” If this is what you want me to do, and to do Your will. I said, just open the doors for me and I will go through them and I will never look back. I said.” Just help me. Help me. Help me see that this is the mission that you want me to serve.”

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

Justin Gracieux: We perceive challenges as opportunities, with our nonprofit. We are looking at the glass half full because we have so many opportunities to rewrite the course of history for our heroes.  We can do right in the world,  serve others, and pay it forward and save lives. That is our fuel to our cause because we’re here for the right reasons and we’re here at the right time. We want to have an everlasting impact on the mental health of all of those around us.

Photo Credit: L for Louie the Lens (Monrovia, California)

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

Justin Gracieux:  Our impact is bringing our community together for various types of programs. Recently,  we hosted our second beach yoga for mental health. We bring together the community, our military, veterans, first responders for a day on the beach.  We’re conducting our 22-mile challenge. So, we either run or walk 22 miles along the California coast. 22 miles for 22 veterans.  I run it with 22 pounds, signifying the lives taken by way of suicide every day. What we’re also doing is we’re sponsoring psychotherapy treatment sessions for our combat veterans. We are sponsoring gym memberships for our first responders, Veterans Military, across various gyms here in Southern California.

Photo Credit: L for Louie the Lens (Monrovia, California)

Right now we’re running multiple programs. I think one of the more specialized programs that we’re actively involved with daily is, is providing street-side resources for our homeless veterans here in Los Angeles County. Just a couple of weeks ago, we put together approximately $4,000 worth of resources, with items such as hygiene products, clothing, tents, insect repellent supplies, and more.  Living there on the streets has its challenges. So we’re helping our Veterans who sleep on the sidewalks outside the VA with the rodent issue that they’re faced with daily.

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

Justin Gracieux: To end the war on suicide. We’re doing everything we can every day to prevent the next suicide from occurring. I mean, we’re in it for a long fight. We won’t give in we won’t back down. And we have the right people involved in this organization to help accomplish that.  We’re just taking it one day at a time right now because this battle that we’re faced with isn’t easy.

Photo Credit: L for Louie the Lens (Monrovia, California)

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

Justin Gracieux:  I’ve learned that it’s our responsibility to honor the legacies that those who have paid the ultimate sacrifice for our country and for our freedom. It’s our responsibility to continue to honor the names of those that are no longer with us. We have to continue to rely on each other to really continue to amplify the message within our own communities and even in our own households, and really look after one another.

The after-effects of someone taking their lives and those that have to live with it have been affected by it tremendously. I know some individuals that are still impacted by those who have taken their lives, and it breaks my heart to know that they still miss their loved ones. And they always will. It never goes away. So heartbreaking.

Photo Credit: L for Louie the Lens (Monrovia, California)

Charity Matters: Do you have any last message for us on veterans Day?

Justin Gracieux: Let me tell you a little short story. The other day I left work, and I’m literally sitting in the driver’s seat of my truck. To my left, I see this gentleman sort of kind of rocking in his truck. And I was like, that’s a little weird. So I finally looked and this gentleman was looking at the sticker on my truck.  All-around every window of my truck. I have Oath to Country Foundation stickers.  This gentleman’s looking at a sticker. So I finally wrote on my window,  this is a foundation to save our veterans from taking their lives.

And it was just like that because we’re both at a stoplight, he’s about to leave, I’m about to leave. Sure enough, he sits back down. And he turns his face, one eye was missing. He raised his arm to salute me and his hand was missing. When you ask about what motivates our mission? What propels us to keep going?  When we think we’re not moving anywhere, it’s experiences like that, that remind us that God is sending these messengers to us, to keep going and to never back down from this fight. 

CHARITY MATTERS.

 

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

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Cancer

Episode 28: Pancreatic Cancer Action Network (PanCAN)

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

Charity Matters: What Have been your biggest challenges?

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

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

Julie with Patrick Swayze’s widow, Lisa Swayze

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

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

CHARITY MATTERS.

 

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

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Episode 27: The Pollination Project

I have to confess, I have never been on a dating site. Recently, one of my team suggested a site called PodMatch. While not a dating app, rather an app for connecting podcasters and guests. I admit, I was skeptical but willing to try. Through the most unexpected and roundabout way I had the privilege of being connected to today’s amazing guest, Ariel Nessel the founder of The Pollination Project.

Ariel is a successful real estate developer by day, a practicing yogi and an inspirational human being. You are not going to want to miss this incredible conversation about what inspired Ari to rethink philanthropy and create  The Pollination Project.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what The Pollination Project does?

Ariel Nessel: When you think about what is the most synergistic form of relationship in the world, people often point to pollination.  The reason is because  you can’t have a distinction between who is giving and who’s receiving in that relationship. That’s where the name, The Pollination Project, oriented from.  Like our name, pollination is a process that starts out small but has a huge impact.  Our theory of change is that we work on small grants. We are supporting individual changemakers  who feel a unique calling to be of service in the world.

Our grantees do this work on the basis of volunteerism, as opposed to a place of occupation. We’ve given out over 4000 grants and  most of the grants are $1,000 each. We also provide service to support our grantees in their unfolding journey of service. We’ve placed grants into over 120 countries. The commonality of all the things is that we are creating something that develops more compassion in the world. Compassion, for me, is defined as the longing to reduce the suffering of others.

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

Ariel Nessel: I’ve been active in philanthropy,  before founding The Pollination Project, as an as an advocate for things that I really cared about. Through that process I started giving and contributing to different groups that I thought were doing really good work in the world. My journey of philanthropy deepened but it wasn’t as fulfilling as I would have liked. I was writing bigger and bigger checks but I wasn’t feeling nourished inside by a bigger check.  It was the intimacy I had with philanthropy that felt like a cog in the wheel.  I felt like there was so much more to offer than financial capital.

So what came up for me was this question of how can I expand what I’m calling to offer? How can I feel more engaged in the world than a few minutes being generous, financially?   How can I support and nurture and empower the most good from people? What came out of that was this idea that there’s probably some other people who want to do good in the world.  How do we find those people, make them and acknowledge them? Then, how do we make them move from that point, too wouldn’t it be great if I did something about that?

So the idea that came out of it was to give one grant a day.  Picking a whole network of people to work with in different movements who are asking these questions for themselves. Then to figure out which of those people are at the right point in their unfolding path to to be resourced with these grants to do something in the world. That became The Pollination Project.

Charity Matters: What are your biggest challenges?

Ariel Nessel:  There have been myriad challenges along the way. Early on, it was the question of how do we find these people? You want to give a grant every day, you want to find good people. So how do we locate those people? Further down as it was unfolding, became how do we provide more than money? What is it that people really need? Other problems, that came up were questions like how do we change the focus for our grantees? We wanted to know who they become by accomplishing their project?  

We’ve seen so many people who, as they grow their projects,  their original motivation gets lost. Sometimes it becomes about building something, as opposed to like leaning into that seed within them that they cared so much about. How do we  nourish that seed of caring?

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

Ariel Nessel: I think one of things I’ve learned from my business experience is that what gets measured gets done. So it’s really important, what we measure what we’re paying attention to.  For The Pollination Project we have how many grants we’ve given. We measure do they do what they set out to do? How many volunteer hours were provided in it? What do they write about how they were changed the process? Who was who was affected by their project? What percent of our dollars go to grant making versus overhead.?

The impact to be able to tell almost 5000 stories becomes really important to us. And even the stories that aren’t always a success.  It’s not like it’s only worthwhile celebrating if you accomplished what you wanted to accomplish. Our failures often lead to greater success down the road. What do our grantees learn in the process of their mistakes? This is what’s beautiful about the $1,000 grants, they’re small enough that we don’t get attached to every one of them working out. What do we learn from the ones that don’t work out? Where do those people who try it and “fail”, what do they learn from the process? 

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

Ariel Nessel:  I think the biggest dream I have is knowing that we played an enormous part in uprooting apathy around the world.  So that anyone who ever had their own dream of how they can use their unique knowledge to make the world a better place, does something about it.  So that these change makers knew that someone saw them, acknowledged them and was there to resource them. That there were so many grantees around the world that it wasn’t just us but that people copied us all around the world. So that philanthropy wasn’t just done by giant organizations, but there were innumerable smaller positions and individuals resourcing anyone who felt a similar calling.  I think that would be my dream.

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

Ariel Nessel:  So many lessons but asking what do I want for the world? And how can I be a person who helps manifest that? How do I live as an exemplar of what I wish for the world?  Because purpose is such a big part of my life, I’ve created this acronym on what to engage. The acronym is pursue.

P is for personal transformation. Where do I need to grow as a human being?  I started The Pollination Project where I wanted to grow and be able to see the best in others. I wanted to grow having a daily practice of generosity and feeling a deeper embodied sense of service.

The U is for unique.  Where am I uniquely positioned? What am I uniquely called to do?  I felt really called to support changemakers.

The R is for relationships. What are the relationships I have? Which ones do I get to spend more time with those people I really care about and want to learn from?

 The S is serendipity or synchronicity. What is life pushing me towards? What success are you manifesting without too much effort?  Where is there a sense of ease like a finesse that comes from things? 

The U is for understanding.

The E is for external transformation or efficacy. Asking, where can I have the greatest impact? So I try to integrate that with all these other parts of it. A big part of the worlds problem is apathy and indifference. One way to address that is to demonstrate that there are people who have moved beyond apathy.

Charity Matters: How has this journey changed you?

Ariel Nessel: I think that all of the above has really changed and made this path so much more joyful for me. This is why a harvest approach seems more appropriate to me than the activists. There’s not an exhaustion when you’re just going where there’s flow. You don’t get tired. Rather, it’s a regenerative energy. There’s a joy to giving, to service and life.

CHARITY MATTERS.

 

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

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

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Episode 26: Love Not Lost

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

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

Here are a few highlights from our conversation:

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

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

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

Charity Matters: Tell us what success you have had? 

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

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

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

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Episode 25: The BumbleBee Foundation

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

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

Here are a few highlights from our conversation:

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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Episode 24: Be Perfect Foundation

I have been privileged to meet hundreds of truly remarkable humans over the years. All of them are amazing but there are always a few that are so dynamic, charismatic, passionate, and wise that you can never forget them. One of those people is the remarkable Hal Hargrave. You may remember his story from a few years back. Hal was involved in a tragic accident that left him paralyzed fourteen years ago. He used that experience to serve others suffering paralysis with his nonprofit the Be Perfect Foundation.

Join me today for a conversation that is better than caffeine. If you have read Hal’s story and not heard his passion, you need to take a listen. Trust me, this will be a gift you give yourself today. The man is pure light and inspiration.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what the Be Perfect Foundation does?

Hal Hargrave: Be Perfect Foundation– provides direct financial and emotional aid to individuals with paralysis. The foundation approves scholarships for everyday medical necessities such as; medical supplies, wheelchairs, home, and car adaptations, medical equipment, and exercise-based therapy.

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

Hal Hargrave:  Shortly after I got injured, I remember lying in my hospital bed and coming to the realization that with every individual that walked through my hospital room, that each individual that left my room and left the hospital took away a mindset, approach, mentality, and went about the rest of their day emotionally in a state that was directly predicated towards my mood state, mental state, and how well I was emotionally coping with my injury and circumstance.

 I came to a quick realization that I could give each and every individual a positive takeaway that could set the tone of their day for the rest of their life. Finally, I came to the consensus that each and every decision that I made about how I was going to treat, talk to, and share moments with individuals was going to directly affect them either negatively or positively.  I was not willing to be a part of the simple idea that I could negatively influence somebody’s life any longer.

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

Hal Hargrave: I believe that this is meaningful and purposeful work. I’ve stopped asking “why me” and I’ve started asking “why not me?” Once I came to the realization that this happened “for me” and started looking through the lens that I “get to”  do what I’m doing in my life. I started realizing that maybe this really is a blessing. That the life that I’m living is far bigger than just me and is for me.

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

Hal Hargrave: I know I have made a difference in this world when others see differences in their world being realized. When other’s dreams come true, their goals are achieved, and happiness is obtained. 

Charity Matters: Tell us what success you have had?

Hal Hargrave: The success that we’ve had over the past 14 years of a philanthropic mindset as a family and as a community has been nothing short of amazing. We have raised over $7 million for individuals suffering from paralysis. This does not include the resource of hope that we have built through being a physical, literal, and emotional resource to those who are in need.

Charity Matters: What has your impact been? 

Hal Hargrave: Our impact has changed lives. Over the past 14 years $7 million and well north of 500 people and families. It has changed lives in the way that people live independently. How people live without despair any longer because they see hope and much more. The financial support that we provide to individuals to seek out therapeutic options has allowed them to achieve a healthier form of themselves. Having their health has contributed towards staying out of the hospital as well as finding a network of people that they can relate to. We provide a place where they will not give up, and emotionally being in a place where they see that their contributions to society and to others are life-changing.

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

Hal Hargrave: My dream is for us to get to a place where we have an endowment. An endowment would ensure that we would be around for life. Ideally, if this endowment was established, we would be able to continue to provide scholarships. This foundation should be around forever.

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

Hal Hargrave: One of the major life lessons that I’ve learned from this experience is the things that we think limit us just might be the platform that we need to propel ourselves forward to actually helping create change.  We always think that we have it as worse.  However, maybe life gave us an opportunity, not a setback.

When we start looking at life through a lens that maybe something was preventing us from something even worse happening, we start to live with the appreciation that we have a second chance. Sometimes these circumstances that put us into a deep, dark, and physically disabling place, actually are the opportunities that give us the tools that we need to create change in others’ lives. You don’t need to create change through physical activity. You can create change through intentionality, sincerity, words, and advocacy.

Charity Matters: How has this journey changed you?

Hal Hargrave: This journey has changed everything for me. I will be honest with you, 14 years ago I did not think that my life would amount to anything. I was under the impression that my physical setbacks in life would propel me into a place of a life that was meaningless, hopeless, and unfulfilled. What has happened over the past 14 years, which has not been easy, and has not been because of the lack of tenacity, trying, and getting up with purpose, has been nothing short of a dream could true.

CHARITY MATTERS.

 

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

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Episode 23: Our Wave

Last year when we were contemplating a podcast we had an incredible interview with two amazing nonprofit founders about their nonprofit, Our Wave.  As thousands of students head back to college this month it seemed like a good time to revisit our conversation with Kyle Linton and Laura Sinko on the topic of sexual assault. While never a comfortable topic, it is an important one.

There are more than 433, 638 sexual assaults in the United States each year. Join us today for an insightful conversation from two incredible perspectives about the new and exciting ways Our Wave is bringing healing to tens of thousands through their work.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Our Wave does?

Kyle Linton: We really started Our Wave in 2018 with the idea that we wanted to better support survivors of sexual trauma and give them a mechanism to anonymously share their stories.  What we found was that there are all these opportunities for people to share their stories, which are incredible, but they’re very public.  Survivors wanted to see other people’s stories, they wanted to share their own stories, but they didn’t necessarily want to do so publicly.

Since we’re technology design people, we wanted to create a platform where people could share their stories anonymously. We wondered if we could try to lean into the healing components and leverage research to give people resources as they’re sharing their stories and help them move past their previous instances of trauma? 

Laura Sinko: I met Kyle at a sexual violence conference.  I am a nurse by training and am also a researcher. My research was in healing after sexual violence. When I was interviewing survivors, I noticed this gap where people were really longing for community and for a place to really say and process their truth. Because I think sometimes you keep it inside and you don’t really even know how to put words what happened.

 I stumbled across Kyle and heard him saying he wanted to create this platform. His vision is to help people tell their stories and then connect them to a community. Kyle wants to help people learn from each other, what works for them and what doesn’t… really resonated with me.

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

Kyle Linton:  In October 2018, someone in my life, directly experienced sexual violence. Somebody that was very close.  For me, it was a really difficult period because I was trying to figure out a bunch of different things. I wondered, how do I support this person? How do I help them?  And even as I’m feeling all of these things, I can’t even imagine what this other person is feeling who experienced it firsthand.

Then I realized that I have the opportunity and experience building companies and products. So I said, “Well, I have the capacity to do something here.” I got this idea, what if we could create a place, where somebody like this person very close to me, could go and see other survivors to get support and find healing resources?

I started just kind of pulling people from my life and saying, “I would love your support on this. If you have time?”. Then we found Laura at a conference. I said, “let’s bring it all together into this thing that can help survivors, and then let’s try to scale it like crazy.”  So, that’s really where it started. 

Charity Matters: Was there a back story that led you to this type of work?

Laura Sinko: Unfortunately, being a woman on a college campus, I felt like it was happening to so many of my friends who were experiencing these sexual violence experiences. So I got really interested in sexual violence since there are so many people in my life that were struggling to find healing. A lot of the work especially in medicine and nursing is focused on that deficit like you have trauma, you have depression, anxiety, and there’s so little focus on the healing aspect.

I was getting my Ph.D. in nursing, smack in the middle of my program, when I had my own experience of sexual violence. It was interesting because being a quote-unquote, “expert”, right? You think oh, I’m an expert in healing after the violence. I’m gonna be set. I can do all these amazing things because I know what to do. I have all the tools and it’s different when it’s yourself. It’s a totally different beast. And so that’s why it’s really important to really build that community because you can often feel like you’re all alone if you don’t get to share your story in some way. That is that moment when you know this just isn’t okay. 

Charity Matters: What are your biggest challenges?

Kyle Linton:  I think the biggest challenge for anybody doing this kind of work is how do you stretch minimal resources to make the most impact?  The beautiful part about our organization is that because it is a technology platform, it has the potential for a massive scale. The trick for us is trying to support all these different populations and individuals who have these different levels of need.

Laura Sinko: I think funding is our biggest challenge. It would be nice for all the work that people are putting in if we could pay some of our staff for their work. And that’s not really me or Kyle, but the designers that are doing all of our content and all of these other people who are really putting in a lot of work. So that’s why my thing is it’s always about funding.

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

Kyle Linton: I grew up in a household where my mom has run a nonprofit for 20 years maybe. She’s amazing. I had a household that was comfortable and it gave me the opportunity to do impactful work.  I’m incredibly thankful for growing up with that sort of motivation.  I was not encumbered with student debt and it gave me the opportunity to try to leverage my skills to help people. I’m in a position to do that, and a lot of people aren’t.

Laura Sinko:  For me, it really truly is this the survivors.  I was a mental health nurse for a while I’m now a sexual assault nurse examiner. Over the past four years, I have met just countless amazing survivors who have given me the privilege of hearing their stories and hearing their struggles. Whenever I have to write a grant or something that feels really daunting, I have this ritual where I like will light a candle and remember why I am doing this.

 It’s like bringing the survivors in the room with me, the people that are counting on me and our team to really push this forward. And I will also say that being a part of this team of eight completely volunteers, people that give their evenings to this work their weekends to this work. I think that is also incredibly important.  Not every team has that cohesion, but I think we do which was really helpful.

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

Laura Sinko: It’s really been the FAQ Fridays. I think putting some questions that I kind of had when I first started experiencing these things, like, how do you manage triggers? Have you ever had that moment where you’re not really sure if it actually happened and you doubt your experience?  It’s like, we’re all looking for the same answers.  I think that participating in that has been really helpful to see really that we’re all are experiencing different things.

But there is some common thread between all of us, no matter how you feel. What we do is all about creating connections and community. That’s really the essence of what nonprofits do is bringing people together to help each other to solve something that’s at the core of what we do. So being able to build a big community like that in such a short time is so incredible.

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

Kyle Linton:  I think that between the content and the platform that we have created we are somewhere between 100 and 200,000 survivors that we’ve been able to access and engage with and support in some capacity. Obviously, our aim is to increase that.  We’re lucky as a technology organization that the number one thing that we have to our advantage is that scale and that ability to very quickly expand our efforts and reach that many people.

Laura Sinko: I think with social media, specifically, the direct messages, I just pulled up one now because it made me feel so good. This person said,” I just wanted to say how grateful I am to have found your page. I’ve struggled with what happened to me. So I really like to say thank you. I know you don’t know me, but just existing You make me feel seen.” And I feel like that is just something that when you think of impact is so important. The thought of being seen when you feel so alone is what keeps me going. 

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

Laura Sinko:  The main thing that I learned is that it’s possible to have an idea that you think fills a need, go out and do it. I noticed this gap and thought, I’m just a nurse, I can’t do this.  That is really important no matter who you are, or where you’re at if you have an idea and you think it feels a need, and it’s really going to help people, take a chance on yourself because I feel like you can do so much good for other people.

Kyle Linton: I think internally, it’s been incredible to see how people many people want to give back and contribute to helping other people. What’s been really surprising to me, even just outside of our core team, is the number of volunteers that we have that come to us and say,” Hey, I’d love to get back and contribute in some way.  I just want to help.” It’s been really inspiring to just see how much people want to contribute. I would say it’s been really amazing to see what we can do with absolutely no resources and to figure out how to be scrappy and how to create something from absolutely nothing and to have it be so purely good. 

Charity Matters: How has this journey changed you?

Kyle Linton: I think for me, the biggest one would be understanding all of the different things that people experience at different points in their life. And then seeing how that impacts them in so many different ways that I could have never imagined really getting a much level deeper level understanding of trauma.

I think makes you more empathetic, thoughtful, and makes you want to listen to people more because this happens a lot more than you can imagine. And it affects people differently. So, really learning to be empathetic, to listen, and to understand has been really beneficial to me.

Laura Sinko:  But on the other side, I think connecting with folks like Kyle, who maybe didn’t experience it himself, but have that drive to give back. I’ve just been shocked by the people who maybe haven’t had that in their own personal life in terms of direct harm, but still feel compelled to come forward and help. People say,  look for the helpers, but seeing those wanting to help has really given me a lot of hope for the world. We do this in the hope to help other people to move the world forward a little bit,  one person at a time. That’s why we’re here.

CHARITY MATTERS.

 

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

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Episode 22: Until There’s a Cure

Until this past year and a half, many of us think about disease and illness as things that affect other people and not us. COVID changed all of that for everyone. We all realized how closely we are connected and our opinions of health are forever altered. Before COVID, there was something called AIDS that many of us have forgotten about.  One person who hasn’t forgotten is our guest today, Nora Hanna, the Executive Director of Until There’s A Cure.

Join us as we discuss how the landscape has changed for AIDS and the beauty of what happens when people come together to make a difference. So often we think with nonprofits we are taking on impossible causes. This conversation was so enlightening because it really shows us that time and commitment result in positive changes. Until There’s A Cure is a wonderful example of one organization’s mission to continue to educate the world on HIV AIDS.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about Until There’s a Cure?

Nora Hanna:  Until There’s A Cure was started in 1993 by two moms in Northern California who were really worried about what the world was going to look like for their children. They were devastated by the loss of friends to HIV and AIDS. So they came up with the idea to sell a bracelet to raise funds and awareness. It was a simple idea that has had a huge impact. We were the first nonprofit of any kind to celebrate it.

We started working with small artisan groups around the world, mostly in Africa. The goal was to find women who are true artists and giving them a vehicle to sell their merchandise. What it’s enabled them to do is really take what they’ve been doing for generations. We buy it from them, help them market it and then we sell it. Then with the funds that they have raised, they have started school for their daughters, they have been able to feed their children, they have been able to buy their own medication. So it’s really embracing, educating, and empowering villages of women. And when you change the life of one woman, you change the life of an entire village.

Charity Matters: What is the Back sTory of Until There’s a Cure?

Nora Hanna: In 1993, when they actually named the foundation Until There’s a Cure,  there was a lot of backlash. People didn’t want to talk about a cure, they wanted to talk about therapeutics to keep people alive. The foundation has always worried about today, direct care services, education prevention, and then the future vaccine research and development. So it is, and always has been today, tomorrow, and 10 years from now. So it is quite fascinating to look at what has come down the pike.

Charity Matters: What are your biggest challenges?

Nora Hanna:  Trying to raise funds during another pandemic has been a huge challenge. And complacency. People really do believe that AIDS, HIV has been cured. Because we don’t talk about it as a society, it’s not at the forefront. HIV doesn’t directly impact people like cancer,  autism, and all the other well-funded organizations out there.  We just need to keep talking about that HIV is still here. Yes, you can live a very long productive life. But just like any chronic illness, you don’t want to have to take medication for the rest of your life.

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

Nora Hanna:  I grew up in the fashion industry and had my own jewelry company. In the 80s, in the 90s, our industry was hit so hard. I lived in New York then and I took care of two of my best friends until they passed on.  I carry that with me every day.  I’ve known so many people whose lives were cut short, in their 30s and it just makes me want to work twice as hard.

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

Nora Hanna: Last year, at the beginning of the pandemic, three of our organizations had gotten very large orders for their merchandise. We were really hurrying to get everything from Zambia and South Africa to us.  I was very worried and I didn’t know what to do next. Eventually, I received a couple of messages from our partners in South Africa thanking me for the money. The funds saved their entire village for five weeks and allowed their children to eat. That is when you have to say, I need to work twice as hard.

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

Nora Hanna: We have been able to provide seed money for the International AIDS vaccine initiative and we have helped fund, UCSF aids Institute. We work with Food for Thought up in Sonoma, California,  feeding people living with HIV and AIDS for 30 years. Since 1993 we have worked closely with the San Francisco Giants, which allows us to present our foundation to a packed stadium. So there are certain big chunks that you can look at and say we did that.

Through our internship program, we’ve worked with over 100 high school and college children. When our interns come in, I always say HIV is my passion. You need to find your passion. Whatever level you can give back, whether it’s volunteering once a year, or going to work for an organization, find it.

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

Nora Hanna:  The dream is that we would find a vaccine that can be given away around the world for free.

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

Nora Hanna: I’ve always wanted to give back on a bigger scale than I’ve done in my past.  This work has really given me the opportunity to feel part of something so much bigger than myself. Really just to be grateful, every day that I’m allowed to do this work.

CHARITY MATTERS.

 

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

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Episode 21: The Yellow Heart Committee

People say that youth is wasted on the young and never has that statement been less true than with this incredible nonprofit founder, N’dea Johnson. At only 24 years old she has undergone incredible personal loss and trauma and has used that to help others with her two-year-old nonprofit The Yellow Heart Committee.

Join us today to learn why you are never too young to make a difference and inspire others. Hear N’dea Johnson’s inspirational story of loss and perseverance as she works to heal and serve survivors of sexual assault and trauma.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what The Yellow Heart Committee does?

N’dea Johnson:  We support the holistic mental health of trauma survivors through policy, advocacy, education, and community outreach. How we do this through the pillars of HEART, which stand for Healing, Empowerment, Advocacy, Relationships in Therapy. So everything we do programming-wise has to fall under those pillars making sure we’re always centering the survivors. A big part of our work is communicating and advocating for survivors. We do that by working with elected officials to help draft legislation for trauma survivors.

Charity Matters: You are young for starting a nonprofit, were you always philanthropic?

N’dea Johnson:  I’ve always enjoyed doing work and volunteering in the community because of my mom. From a young age, she always was the one that was telling me, you have to support others, you always have to be good to others and always help people.  When I was a fifth grade, I was organizing students to get tutoring for the gate program and Star testing. I’ve also learned from her because she did have breast cancer.  Even with all that she was going through, she was always still caring and concerned about the community. And that’s something I replicated.

When my mom passed away, I ended up starting an organization in my middle school a few months after she died. I was in seventh grade and raising money for families with family members who have cancer. The whole point was to donate the money to help support anything that families were missing.  People were always surprised and say, “You’re 12 years old,  your mom just died and you’re doing this?”  That’s how my mom was when she was going through adversity herself. I’m going through it right now. And I know she wouldn’t want me just moping around. This work is how I handle my grieving is by turning it back into community service and doing things for others going forward.

Charity Matters: What was the moment you knew you needed to act and start  The Yellow Heart Committee?

N’dea Johnson:   It started on January 1, 2019, when I was sexually assaulted.  I actually had to go back to school, two days later, because it was winter quarter and I was graduating early from UCLA.  I’ve always been a 4.0 student always and this really destroyed me.  The irony is that I was trained in rape response because I was a Resident Assistant. Rather than letting myself heal, I tried to suppress it because I was so determined to graduate early, to go to Columbia for grad school. I kept it all to myself.

In March of 2019, I had pre-scheduled jaw surgery. I came out of jaw surgery paralyzed. The doctors were said, “How did you have jaw surgery, but your legs are paralyzed?”  Nobody knew what happened, even I didn’t know what happened. I couldn’t talk because I had jaw surgery.  I  had to relearn all of my functions; eating, talking, walking everything. Then we realized I had experienced conversion disorder.

 Conversion disorders are when you convert the psychological stress of trauma into a physical reaction. So when I went in for surgery and went under anesthesia, my body thought I was being attacked again. As a result,  I ended up having nerve damage.  Being in a rehab facility in the hospital and that’s where it really made me want to start this.  I gave birth to the Yellow Heart Committee in a hospital bed. Once I could walk again, I knew the first thing I was going to do was report him at the police station.  At that time I hadn’t. The second thing I was going to do was start a nonprofit. So that’s where I really got started.

Charity Matters: What are your biggest challenges?

N’dea Johnson:   It is so hard because I’m learning from the ground up. But I’m also learning how to be an adult in the same capacity. So things like you have to pay your taxes for like nonprofits. I’m like, “I don’t know how to do that?”  Those types of things I’m having to learn and becoming an adult while growing up.

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

N’dea Johnson: The individual people one hundred percent. My nonprofit, everybody’s unpaid right now and we all have full-time jobs or are full-time students. We have our days where we have a really rough day at work. The team says,
” All right, what are we doing next? How we’re gonna solve this?” And it’s just knowing that  I can have those moments of vulnerability and say I need support. They have my back and they’re like, “Okay, so what do you need us to do to keep this nonprofit going? How can we support you?” Those individual people in terms of my team are what I love, and it feeds me to keep me going. That and the survivors who reach out to me in times of crisis.

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

N’dea Johnson:  We’re the connectors definitely. We bring the people who are the decision-makers and the survivors to the table.  In six months, we met with 44 elected officials to advocate for our Sexual Domestic Violence Task Force Legislation that we wrote. We are introducing that to California and working to get a federal level hearing.  Our state-level hearing is in  September on mental health and trauma at the Capitol in California. We definitely bring those people who can make those decisions to the table to hear the stories of survivors.

Charity Matters: How has this journey changed you?

N’dea Johnson:  I would say my self-awareness has changed, I definitely think that I’m more conscious of not just my own experiences, but also how my words or my actions or anything can impact others. Something that’s really been a big thing of mine is that we may want to judge somebody right away. But let’s think about why they’re acting the way they’re acting. Let’s go deeper than the immediate reaction, and wonder what trauma happened for why did they react, right?

That’s not something that I would have been conscious of two years ago. And I think that I’m more in touch with who I am in terms of why I’m feeling a certain way. Or even how I need to react to a situation and to be more empathetic to people. It is important to realize what is the intent versus impact. The intention may not have been to hurt, but the impact may have hurt somebody. Being aware of those types of things has really been something that has made me grow and change.

CHARITY MATTERS.

 

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Causes

Season Two Episode 20: Once Upon a Room

In full disclosure, there is nothing more fun than talking to your friends about their nonprofit work. Especially when their work involves creating magic for very sick kids with extreme hospital room makeovers.  Think of your favorite HGTV show with the recipient being a sick child and the makeover being a hospital room. Many of you may remember the incredible story of the nonprofit Once Upon a Room that I shared a few years back?

Ford and Heidi Johnson, Jennifer Hull, daughter Josie and Sienna Dancsecs

Join us today for a fantastic conversation with the three Once Upon Room founders; Jenny Hull, her daughter Josie Hull and Josie’s best friend Sienna Dancsecs. Where we will learn about Jenny Hull’s incredible journey from being a celebrity assistant to an adoptive mother and nonprofit founder. These three remarkable humans will inspire you with their friendship, love, and beautiful work helping thousands of children and families each year.

Here are a few highlights from our conversation:

Charity Matters: Can you share Your journey with Josie prior to beginning Once Upon a Room?

Jenny Hull:  I was with an amazing family in Malibu that I worked for and they were very involved in an organization called Healing the Children. Subsequently, I became involved with them too.  What we did there was bring kids here to the United States for surgeries, and then we’d send them back home after they were healed.  Long story short, we got this request for these two adorable high conjoined twin little girls.

It was kind of our mission to bring these babies( Josie and Teresa) here to America and they were conjoined at the head. They were separated at UCLA Medical Center and had a 23-hour surgery. Our girls were the first successful girls to be separated successfully.  Long story short, I am now the very, very proud adoptive mother of Josie, one of the twins. Josie’s other twin is with another amazing family in Valencia and we’re really close together.  The birth parents are really the heroes in the story, selflessly allowing their children to be in America because that’s the only way they would have survived. They really are the unsung heroes in this, we are so grateful to them.  

Charity Matters: What was the moment you knew you needed to act and start  Once Upon a Room?

Jenny Hull: We spent we have spent over the years, I can’t even count the number of days and surgeries there have been too many!  We did we personalized Josie’s room every single time. Everybody would walk in with and they would look at it and say, “Oh my gosh Josie you love pink!” Then they would recognize her as a person instead of her what she was in there for and it really touched our hearts.

We realized it was especially important in a teaching hospital when you have so many new residents, for them to recognize the person is so important. So at 11 years old, we were laying in bed one night and I vividly remember this and Josie leaned over and says,  “Mom, I really really need to be doing something for someone else. I want to help other kids in the hospital.” I said, “That’s a great idea!” We called Sienna who was the same age, 11 years old, and told her the idea. Sienna said, “Let’s go in and decorate these hospital rooms.” Then Sienna came up with the name.

Charity Matters: What are your biggest challenges?

Jenny Hull: Definitely fundraising is a big challenge. In all honesty, we thought when we started we’ll do 50 rooms a year at CHLA. Period. We thought this is great and it’s something that will inspire the girls and they can inspire other people. We didn’t think much of it and we ended up doing 102 or 105 rooms our first year. Our town is so supportive, and they really rallied behind what we were doing and really supported the effort and we were so grateful for that.

Then we started expanding, all of a sudden, it was like the universe opened.  It’s really kind of because the girls took this on. People see the greatness and what it does for the hospital’s families and especially patients.

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

Jenny Hull: What really keeps me going is these two amazing faces next to me. Literally, there are times that I don’t think I can do this anymore. I’m exhausted and fundraising is so hard. We just want to change the lives of these families and these patients so much. Every room is our heart and soul goes into.

Before COVID, we were at anywhere between 40 and 70 rooms a week. There’ll be nights I’m like, we’re done and then I look at Josie and Sienna.  It’s their dream, journey, and vision.  I feel like I cannot let down for a second if we just need to keep going.

Charity Matters: Tell us what success you have had and the impact of Once Upon a Room?

Sienna Dancsecs:  In terms of impact, we started in one hospital at CHLA in Southern California. Since we began we’re now in 12 hospitals across the country. We have had three new people and new states and new hospitals reach out in the past five days, about opening.  It continues to grow, we’ve done over 4000 rooms.

  I also think one of the things when it comes to impact is the impact we have on the kids and their families with their hospitals days and medical journeys. More than that we have such an impact on the volunteers, the hospital staff, and our donors.  I have had friends that have come to the hospital to volunteer, in high school and college, not knowing what they want to do when they grow up and leave saying, “Oh, I know, I want to be a nurse or I want to be a child by specialists.” One volunteer is now working in the foster care system because she met people through her work with us at the hospital. So I think it’s everybody around that really is affected by it, not just the patient or family. It’s everybody involved.

Charity Matters: How has this journey changed you?

Jenny Hull:  I’ve definitely learned so much about human compassion. To walk into rooms and the life lessons that we’ve just learned from our patients.  Watching their journeys being able to sympathize and empathize with what they’re going through and just to look at the world with such love, and try to figure it out.  There are people you walk by every single day that you just know are fighting some battle. It’s how to appreciate the people you are asked to be with on a daily basis. The greatest gift I’ve been blessed with of all the people we’ve been surrounded with, Josie and Sienna. Literally, truly the best gift we could have ever asked for. So, gosh, I’ve learned so much and I’m so incredibly grateful that we’ve been led down this road. You know, we didn’t we didn’t pick it. It picked us.

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

Sienna Dancsecs:  I learned a lot about the business of nonprofits and how all these things work. Walking into kids’ rooms, every day who were super sick, or they were at the end of life made me realize how lucky I am just to be healthy.  I think it’s something that we all take for granted. So that’s something that I quickly learned,  talking to these kids, watching them fight for their lives, watching them lose their battles to cancer, it was really hard to watch. But it made me so grateful for everything that I have.

It also taught me from a young age, how important it is to give back and to help other people. I feel like it’s a really great gift that I got from Jenny and Josie that I learned that this was something that made me feel so good and made me feel like I was doing something to help other people. And it’s something that I continue to do. I know, I’ll take it with me wherever I go. Prioritizing, helping other people giving back, brightening somebody’s day, even if it’s something small. You never know what kind of difference that you can make.

 

CHARITY MATTERS.

 

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

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

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