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Episode 33: Matt Kamin Nonprofit On the Rocks

Each of us walks a path in life that takes us with a multitude of twists and turns. Today’s guest, Matt Kamin is no exception. Matt has lived a life full of philanthropy in so many ways. Before Matt became the host of the popular podcast, Nonprofit on the Rocks...which is how we met and Co-Founder of Envision Consulting, he was a two-time nonprofit founder.

I am so excited to share this incredible conversation with Matt about his multitude of experiences in the nonprofit space. Matt’s story is the perfect example of how one seed of compassion turned into an inspiring life full of service. Matt is truly a ray of sunshine and you won’t want to miss our joyful and uplifting conversation.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about Your early philanthropic experiences?

Matt Kamin: So that is a really good question. And I also agreed, where does that come from? Why do we take on jobs that pay nothing for more stress and more pressure at work? So I think that my nonprofit passion, the love that I have for this space comes from my grandma.

My grandmother was born with polio, and she moved to LA on her own with two kids. In the 1940s, she put together a booth at Santa Monica Pier. It was like a nickel and a dime machine and she saved her pennies.  She saved and started investing in real estate. This is a woman in the 1940s in LA on her own and she grew this empire, this actual real estate empire. So first off, I’m just beyond impressed by this woman who, who was able to go and make all this happen for her family. right. And as a huge part of that, she gave back.  I would tell you, like 25% of whatever it was that she made, she gave back to nonprofits.

As a child, she used me to raise money. I remember I think the first thing that I ever did was I helped auction off a car. One of her nonprofits was selling a donated car and she used me a six-year-old to sell tickets. That was my first taste and watching her do it and that was it. She also inspired my mom and my dad to also give back they chaired nonprofits as well. So in college when I came out, that was the time, and it was like, Okay, this is time for me. 

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

Matt Kamin:  I volunteered at the time it was called the Gay Lesbian center.  What we did was we went out on the weekends and talked to kids who were basically selling themselves in the park. The first kid that I talked to, had been kicked out of his home.  I remember looking at him, he was my age and he was on all the drugs you can possibly be on. He had a pimp and he was trying to make money in prostitution.  I  remember saying to myself, how did I get so lucky?   And that was it. That was the switch and when I said this is my life. And so I started a nonprofit at UCLA to bring support networks for gay kids at college. And that’s how my nonprofit career started.

I’m very proud of that college nonprofit because it still exists. They have a multi-million dollar budget, and it’s an international nonprofit.

Charity Matters: Now that you are helping nonprofit Founders, What are the biggest challenges you see?

Matt Kamin: Envision Consulting does both strategy and searches for nonprofits. That’s all we do. So it’s half strategy, half recruiting. On the strategy side, strategic plans, board retreats, mergers are huge things right now. Then on the search side, it’s recruiting for C suite individuals.. I’ll give you an example.  I have a friend who started a nonprofit. And, she has over the last few months, been losing faith in her organization, because she was not able to find the people to fundraise period.  She’s been like beating her head against the wall trying to figure out what to do. And so we’ve, we’ve had many conversations about what she can do.

 What I will say is most important is when you run a nonprofit is that it’s lonely at the top. You have to fundraise, you have to meet the budget, you have to report to your board of directors who are all volunteers. You have to deal with your staff, you have to deal with all kinds of things and especially in COVID, it’s been impossible. Loneliness at the top is what I will tell you is the most challenging part of being an executive director and a founder. 

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

Matt Kamin: We’ve been talking about this whole year. How do we keep going? How do we stay motivated? It’s hard and the honest answer is there are days that I just want to be done. But it’s really remembering why I do this at the end of the day, why it’s worth sometimes being yelled at by a client, right?

I’ll give you an example of what makes me so happy. We placed a CEO at a domestic violence shelter. We found her. She not only grew the organization but also received a grant for $5 million and just acquired another domestic violence shelter. So now they’re serving that many more victims of domestic violence. Big Wow. She is spectacular in every which way, but that is something that wouldn’t have happened if it wasn’t for us.  So I may not be running a homeless shelter anymore. I may not be making those direct impacts on people’s lives. But she is and she wouldn’t have had that job and be doing this great work if it wasn’t for us.

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

Matt Kamin: This country’s become like the rest of the world, we’ve gotten ugly and we’re all politically just so divided. We can all get together no matter where you are, no matter who you are and we can volunteer at a soup kitchen to give out food to people who are hungry. Right, we can all do that?  I think that it’s really important for us in the nonprofit space and for us all to think about giving back.

The thing to remember is, there’s always going to be somebody who has more, but there’s also always going to be somebody who has less. And so what gets me going is remembering that and giving back.  I can always work harder to get the nicer car,  or whatever it is, but I always try to remember why I did this, to begin with.  I think that’s really important.

At the end of the day, that’s what my grandmother has taught me. You get to where you need to be in life and then don’t forget it.  Don’t forget.  Remember how lucky you are to give and give back regardless of where you are.  

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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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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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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Breast Cancer Research Foundation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Charity Matters

 

 

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

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Gordie, a story worth retelling 17 years later

Gordie's story

This week we are heading to Texas for Parents weekend to see our youngest son.  He attends a big college football school where weekends included tailgates, football games, and obligatory fraternity parties. With so many students heading off to college and parents concerned about COVID and so much more, it seemed like the right time to reshare this story.

Gordie Bailey was a college freshman who died of alcohol poisoning from hazing his freshman year of college. September 17th marks the 17th anniversary of Gordie Bailey’s death.  His parents created a nonprofit organization, The Gordie Center,  as Gordie’s legacy to educate college students about drinking.  The story is tragic and the lesson is invaluable. Sadly, it needs to be told over and over to each new generation of college students.

Loss

So often we do not make discoveries or connections until it is too late.  We do not realize the value of a friend until they have moved away.  We do not appreciate our children until they have left for college.  Often, we do not realize the value of one’s life until it has passed.

Why is it that we wait to make these connections? How is our hindsight is so crystal clear and our day-to-day vision so clouded? This story is perhaps no different. However, the beauty of it lies in the ability to take that clear vision and create something that matters.

This month thousands of college freshmen have left home. Many students are beginning the process of Rush as they look to make new homes away from home in sororities and fraternities across the country. That is exactly what Gordie Bailey did in September 2004, as an 18-year-old freshman at the University of Colorado at Boulder.

Gordie’s Story

Gordie, a fun-loving freshman who had been the Co-captain of his varsity high school football team, a drama star, a guitar player, and a walk-on at Boulder’s lacrosse team was adored by all. He pledged Chi Psi. On the evening of September 16th, Gordie and twenty-six other pledge brothers dressed in coats and ties for “bid night” and were taken blindfolded to the Arapaho Roosevelt National Forest. There they were “encouraged” to drink four “handles” of whiskey and six (1.5 liters) bottles of wine.

The pledges were told, “no one is leaving here until these are gone.” When the group returned to the Fraternity house, Gordie was visibly intoxicated and did not drink anymore. He was placed on a couch to “sleep it off” at approximately 11 pm. His brothers proceeded to write on his body in another fraternity ritual. Gordie was left for 10 hours before he was found dead the next morning, face down on the floor. No one had called for help. He was 18 years old.

Turning Grief into Hope

The nonprofit Gordie Foundation was founded in Dallas in 2004 by Gordie’s parents as a dedication to his memory. The Gordie foundation creates and distributes educational programs and materials to reduce hazardous drinking and hazing and promote peer intervention among young adults.  Their mission is committed to ensuring that Gordie’s story continues to impact students about the true risks of hazing and alcohol use.

There has been at least one university hazing death each year from 1969 to 2017 according to Franklin College journalism professor Hank Nuwer. Over 200 university deaths by hazing since 1839.  There have been forty deaths from 2007-2017 alone and alcohol poisoning is the biggest cause of death. As Gordie’s mother Leslie said, “Parents more than anything want their dead children to be remembered and for their lives to have mattered.”

In almost seventeen years, the Gordie Foundation which is now re-named Gordie.Org has made an enormous impact on hundreds of thousands of students across the country through its programs and educational efforts. If you have a college-age student, think about asking them to take the pledge to save a life, possibly their own.

Why is it that we wait to make these connections? How is our hindsight is so crystal clear and our day-to-day vision so clouded? Why is it that we do not know the value of one’s life until it has passed? Perhaps more than a decade later, our vision is becoming clearer and we realize just how precious each life is……

Charity Matters.

 

Sharing is caring, if you feel moved or inspired, please inspire another…

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Cancer

Episode 25: The BumbleBee Foundation

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

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

Here are a few highlights from our conversation:

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

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

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

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

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

Charity Matters: What are your biggest challenges?

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

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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September 11th Twenty years later

We all remember where we were on September 11th, 2001. It is a moment forever burned into our memories. The people we called, the shock, the horror, and the enormity of it all was more than one could process. None of it seemed real. Tomorrow, we will honor the 20 year anniversary of that fateful day that changed the world forever.

Remembering September 11th

It was a day full of loss and unparalleled tragedy.  The 2,977 lives lost that day, the 6,000 injured, the first responders, the plane in Shanksfield, and the Pentagon. The ripple effect touched every single person in this country. However, like all losses, amazing things came out of it. That day we saw the best in humanity as people helped one another. First responders rushing up the stairs to save people and strangers helping strangers navigate their way out. Our country came together in unbelievable ways, hanging their flags, donating to causes to support the victim’s families, and coming together in an unprecedented unity showcasing to the world the best of America.

The Best of America

We as Americans didn’t stop there because we are a country of doers and action. One of the beautiful legacies of September 11th was the incredible amount of nonprofits that were created. The IRS fast-tracked over 300 charities in the wake of September 11th to serve numerous causes. According to the IRS by 2006, as many as one-third had closed. Many of the organizations that completed their missions such as The September 11th Fund and The United Way of NYC distributed more than 534 million dollars to victims, their families, and first responders.

A lasting legacy of Service

According to the Nonprofit Times, today there are still at least twenty-eight nonprofits still in existence. The 9/11 Memorial Museum an experience that every human being should have and a lasting tribute to that fateful day. Families of Freedom Scholarships have provided over $178 million dollars to over 3, 759 children of 9-11. Causes such as Tunnel to Towers which was created in memory of Stephen Siller. He was a firefighter who gave his life to save others that fateful day, along with 343 others. This year Tunnel to Towers will give 200 mortgage-free homes to our nation’s heroes. This year 9/11 Day.org  is asking all of us to come together and to do a simple good deed tomorrow. Please watch their video above.

September 11th was one of the worst days in our nation’s history but it did bring out the best in all of us. We came together in kindness, in compassion, we helped our neighbors and hung our flags. We realized that we are all Americans. Tomorrow is a new day and another chance for all of us to remember and come together once again in unity and compassion.

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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Causes

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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Charity Matters Inspiration

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.

 

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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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.

 

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Cancer

The Heroes of 2020

If ever there was a year that turned our planet upside is has been this one. Last year we all began 2020 with such hope. A new decade and such expectation that was to come crashing down three short months later. Now we are all counting down the days until 2020 is behind us. As someone who tries to find the silver lining in everything when I look back at 2020 I smile thinking of the amazing humans we met this year. Each of these people gives selflessly to make our world better. I thought today we would look back at some of the remarkable conversations of 2020. And a few highlights.

The Kindness Campaign: Andra Liemandt

We began 2020 by talking to the founder of the Kindness Campaign to learn about their mission to serve the socio-emotional needs of children. This year their work was more important than ever. You can revisit the full conversation, here.

CHARITY MATTERS: WHAT WAS THE MOMENT YOU KNEW YOU NEEDED TO ACT AND START  THE KINDNESS CAMPAIGN?

Andra Liemandt: Suicide is the second leading cause of death among teens. Several years ago this touched my life in a very powerful and profound way when a dear friend of ours took her own life and she was just 12 years old and it was a direct result of bullying.  There was no path for me to start a nonprofit or any inkling that I would be sitting here five years later talking to you about this. That event changed my life forever and was the catalyst for an ongoing healing process with my daughters.

Homelessness:

There are so many incredible organizations trying to help the homeless. This year we met more than a few. These two women especially stand out for their incredible compassion and dedication to serving the homeless.  Heather Carmichael has been working with homeless youth for almost two decades at My Friends Place and  Caitlin Adler works to ensure that the homeless have proper clothing through her nonprofit Project Ropa.

 My Friends Place: Heather CArmichael

Charity Matters: What are your biggest challenges?

Heather Carmichael: There are so many. The landscape around addressing homelessness is under such dynamic change. For years, no one spoke about homelessness and now we have an epidemic crisis. Communities are overwhelmed and LA is in such pain about this. How do we continue to engage communities in meaningful ways so that we maintain momentum towards a solution? 

I feel very grateful to be doing the work at My Friend’s Place, where our main priority is to resolve these young people’s homelessness while continuing to create meaningful opportunities to see the impact and to feel involved. How do we scale to that in a meaningful way? A multitude of things got us here and it will take a multitude of things to fix this. We need to create meaningful opportunities to get our community and supporters involved in understanding and being a part of the solution.

Project Ropa: Caitlin Adler

Caitlin Adler created Project Ropa in 2015 to address the challenges that homeless people face in obtaining and keeping clean clothes. Though homelessness is accompanied by many things, one of its greatest indignities comes from the absence of hygiene services.

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

Caitlin Adler:  Most homeless people literally have only the clothes on their backs. Access to clean clothing is essential to the overall well-being of a person and can be the key to opening doors to employment and housing. How you look affects how you feel about yourself and how others treat you. Now, because of the health threats posed by the coronavirus, the need to overcome those challenges has become ever greater.

Health:

Claire Marie Foundation: Marianne Banister

When former LA reporter Marianne Banister lost her 17-year-old daughter, Claire to melanoma. She and her husband went to work to get the word out about this cancer and created the Claire Marie Foundation.

Charity Matters: Tell us a little about what THE Claire Marie Foundation does?

Marianne Banister Wagonhurst: When this happened to our family, to our daughter, Claire, we were blindsided. And because even the medical profession did not realize kids could get melanoma at this age. It looked different than adult melanoma and it was more aggressive and more invasive. according to pediatricians. Melanoma is the number two, cancer in adolescence from 10 to 19 and the number one cancer in young adults from 20 to 29. This cancer is the number one cause of cancer death and young women 25 to 30. In young people, this disease is more aggressive and invasive than in older people.

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

Marianne Banister Wagonhurst:  Claire. There’s never anything that’s going to make it right that we lost her. There’s never any sense to it. But I truly believe this is her purpose. And if I don’t keep this foundation going and do the work that needs to be done, and I’m not fulfilling her purpose, and we would have lost her for no reason.

Brave Gowns: Summer Germann

Summer Germann is no stranger to hospitals, illness, tragedy, or adversity. What is remarkable about Summer is that she uses all of this adversity, including COVID, as fuel for good. She is a bright light who started a nonprofit Brave Gowns and when COVID hit she reached out to her team to begin manufacturing PPE (personal protective gear) in the form of masks for thousands of health care workers across the country. A modern-day hero.

Charity Matters: How did you decide to get into the PPE (Personal Protection Equipment) for COVID?

Summer Germann:  Friday, March 13th  I called my designer and I knew we had to figure out a way to help. We had talked about making masks and families have asked us for years. I knew we could make them fun. I called my factory and told them what I wanted to do and they had already started a prototype three weeks before. I said you have to give me a product that I believe in and this isn’t about money. They sent over the prototype and I said, “Okay, I just launched.” By Monday we had 11,000 orders.

Scarlet C of COVID

I hate to end this year with this story but COVID was the defining story of 2020. This article was reprinted by a number of magazines and publications and had more views than any piece I wrote in 2020 so it was worth an honorable mention on the list.

 While I didn’t interview any specific health care workers but rather organizations that support them, it is worth mentioning that our front line workers were THE true superheroes of 2020.

There are so many remarkable humans on this planet and these are just a few. As 2020 comes to a close and we look to a New Year ahead I think there are so many qualities to emulate that each of these heroes possesses. Tony Robbins sums up these heroes perfectly when he said, “The people who are most alive, driven and fulfilled are those that seek to lead a life of contribution and service. To something greater than themselves.”  Thank you, Andra, Heather, Caitlin, Marianne, and Summer for showing us by example what true service and living a life of contribution looks like. At the end of the day isn’t that what we are all striving for?

Wishing all of you blessings for a most joyous and Happy New Year!

 

CHARITY MATTERS

 

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Charity Matters Inspiration

A Christmas Wish for 2020

I know this year has been difficult for many of us. When I began thinking about how this year has affected us all, I think that we have a renewed appreciation for one another and most especially our health. This image from It’s a Wonderful Life is a reminder of what happens when we realize what we have and not what is lost. This year our priorities have shifted in the best of ways, our self-care, appreciation for what is important, and how we spend our time. 2020 has changed all of this. As Christmas is just a few days away I thought I would share a few inspirational thoughts to keep us focusing on the true meaning of the season and what matters.

“May you have the gladness of Christmas which is hope; The spirit of Christmas which is peace; The heart of Christmas which is love.”

Ada V. Hendricks

“Christmas is the spirit of giving without a thought of getting. It is happiness because we see the joy in people. It is forgetting self and finding time for others. It is discarding the meaningless and stressing the true values.”

Thomas S. Monson

“At Christmas, all roads lead home.”

 Marjorie Holmes

“My idea of Christmas, whether old-fashioned or modern, is very simple: loving others. Come to think of it, why do we have to wait for Christmas to do that?”

 Bob Hope

 

It is a wonderful life despite the challenges we face. We have much to be grateful for. Wishing you and yours the most magical Christmas season. Merry Christmas! 

CHARITY MATTERS.

 

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

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Causes

Creating the Change

“Sometimes when we are generous in small, barely detectable ways, it can change someone else’s life forever.”  Margaret Cho

Rather than focus on the election today, I wanted to focus on what makes me happy. Honestly, nothing makes me happier than planting the seeds of compassion in our children. A few years ago, that common thread connected me to the nonprofit founder, Molly Yuska of Project Giving Kids. We met when I interviewed her for Charity Matters.  Project​ ​Giving​ ​Kids​ ​(PGK)​ ​is​ ​a​ ​nonprofit​ ​organization​  that cultivates empathy in youth by connecting them to meaningful and age-appropriate service activities.  Their mottos is,“connecting kids to causes.”

 Project Giving Kids was initially launched ​in​ Boston in ​November​ ​2013 after realizing there was no source for families to find age-appropriate service projects for their children. Molly saw clearly that there was a need to leverage technology to make it easier for kids to​ ​be​ ​powerful​ ​agents​ ​of​ ​positive​ ​change​ ​in our​ ​world.​ ​

Project Giving Kids reaches out to nonprofit partners to find volunteer opportunities for a multitude of ages. Four years ago Project Giving Kids hosted their first Create​ ​the​ ​Change​ ​Day​ ​. These days across the country provided a chance to come together as a community to help the amazing nonprofits in our own backyards. More importantly, Create The Change Days teach our children about the importance of service and the power we each have to make a difference.  There is nothing better than combining nonprofit partners and families wanting to instill empathy and kindness in their children. 

However, this year COVID put a damper on this annual tradition. PGK was committed to ensuring that Create the Change Day went on so they will be hosting Create the Change Week. An entire week of free virtual service opportunities for kids and teens. Next week from Saturday, November 7th until Saturday, November 14th  your children can volunteer and participate in amazing virtual service opportunities.

PGK will offer a series of free virtual service activities via Zoom tied to the eight causes on their website. Everything from helping isolated seniors to protecting the environment to helping other kids and fighting hunger.
They will also have a special Teen Track for older youth, so there really is something for everyone.

As Molly said, “We are hopeful we can catalyze a small army to commit themselves to join us in the simple acts of goodness that add up and truly make a difference”  Create​ ​the​ ​Change​ ​Week ​is ​the​ ​perfect way​ ​to introduce young children to the joy of service to others.” 

With all the craziness happening in our world right now, doing something positive to help someone seems like a good idea. So register your children for Create the Change Week . 

As Margaret Cho said, “Sometimes when we are generous in small, barely detectable ways, it can change someone else’s life forever.”

Charity Matters

 

 

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

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