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Cancer

Episode 60: Dana Pepper Bouton Endowment Fund

Years ago when I lost my mom, someone said to me, “The greatest gift you can give the world is a life well lived.” Today’s guest is a fantastic example of just that.  In full disclosure, I have known our guest Dana Bouton for probably twenty years. We have raised our children in the same community. Dana sent me an email explaining that her cancer had returned and was now terminal. She was determined to use the time she had left to leave a lifetime legacy to the City of Hope. The Dana Pepper Bouton Endowment Fund will help families financially devastated by cancer.

Join Dana and June Penrod from City of Hope to learn how one person can make a difference for so many living with cancer. Dana’s humor and insight will inspire you and make you think about how you live. She is a true example of the quote above and what really matters. During our conversation I made Dana a promise that I would re-publish her podcast on her birthday each year as a reminder and a legacy of her work, so Happy Birthday Dana! Cheers to another amazing lap around the sun. Thank you for reminding us all how to live.

 

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Dana Pepper Bouton Endowment Fund will do?

Dana Pepper Bouton: The idea of the fund was set up to help families who are navigating the difficult diagnosis of cancer to have resources for support.  They want world class care in hospitals and need to get transportation, gas,  child care, groceries, and a multitude of other things. So this fund is set up to kick out money in the form of gift cards, to help these families get to City of Hope. More than having the best possible care but receiving some supportive care on the side of having to deal with their loved one being a patient. 

June Penrod: What we do is provide state of the art treatment.  So we are really the champion when it comes to precision medicine of being able to fight cancer.  Not only at the cusp of when it’s worst in your body, but also in the beginning phases of helping our population screening for cancer. So we really did the entire gamut from A to Z on cancer treatment for all patients in Los Angeles and Orange County.

We are really proud of the impact that we are having on cancer patients in the nation. The role that I specifically play is acquiring resources for what we call our Department of Supportive Care Medicine. It is one of the unique elements of City of Hope that make it so special. Supportive Care is basically the emotional and spiritual arm that comes out of the cancer journey that patients go through. So while they can focus on the treatment with their doctors, Supportive Care medicine wants to focus on their emotional care journey.  Then they are really focused on their cancer treatment and not having to worry about any of the external factors that might get in the way of that journey.Charity Matters: What was the moment you knew you needed to act and start this endowment?

Dana Pepper Bouton:  I was diagnosed with stage four non Hodgkins lymphoma in January of 2018. And here we are about  five and a half years later.  I’ve had multiple rounds of chemotherapy, back to back bone marrow transplants, a few operations, infusions, and transfusions. Now I’m terminal after all of those treatments.  You know, I can’t can’t control the fact that the doctors say, “there’s nothing more we can do for you, except try to keep you alive a few months at a time.” 

So I’ve lost the ability to kind of control how long I thought I would live. I came to the conclusion that I haven’t lost the ability to create a legacy for other people. Even though I’ve had basically what I simply call very bad luck because there’s no genetic component to how sick I’ve been. I’ve also been very blessed. And I’ve had multiple resources, in terms of financially supportive community to help me along the way. 

After spending so much time in the hospital, and listening to June and others talk about the supportive care that City of Hope offers. I can create a legacy after I’m gone to help hundreds of people and that makes me feel really good. In fact, being terminal is really not that big of a deal in terms of how many people I can impact during the few months, maybe six months a year that I have left. This brings me such great joy and working with June and seeing her enthusiasm and the people around me who want to give. I just want to work as hard as I can to reach out to as many more people as possible. And I do have a tendency to accost people in the market.

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

Dana Pepper Bouton: I would say number one, I’ve had incredible support at City of Hope. And I also think, knowing that I have very limited time left, I see and feel and touch and smell in here so acutely. But I’m just really inspired by my enhanced senses. And so I love to capture what’s around me from macro to landscape, and put that on my website and share that in the form of wall art or greeting cards, postcards, and sell them, and how those proceeds go to my fund. 

 I’ve laid in bed for sure, and had had some really hard days. But seeing, feeling, talking to people and really hearing and really listening just propels me to keep going.  I know that when I am dying, I’m not going to regret being so tired. While taking pictures, or being with people, I would only regret that maybe I just stayed in bed and felt sorry for myself.  After I die, I want my fund to continue. So I’m pushing to get the word out.

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

June Penrod:  Dana is a great example.  I think she doesn’t mind being the dramatic story of philanthropy, of this woman who should be taking care of herself but instead she’s taking care of others. Even though she received a terminal diagnosis, I mean, look at what she’s doing now.  We have folks who say, we have a great life that we’re living now, thanks to City of Hope and we want to contribute more. 

But we do also have folks who say, “My loved ones are not here with me anymore, but I love the compassion and the care they received.”  And so we want to give.  Then there are folks who have never stepped foot into the hospital but they know the great work that we do. And they want us to be their charity of choice. That blows my mind as well. 

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

Dana Pepper Bouton:  My dream is that after I die, I want this fund to continue in perpetuity. So my dream is to keep spreading the word as long as possible. Then have my family and other people give money once or twice a year, in perpetuity.

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

Dana Pepper Bouton:  I appreciate when people talk to me out of just accepting where I’m at, and not trying to tell me that I don’t have hope. I have hope. And I also know that I’m going to die. Maybe within a few months, or perhaps, you know, a year. I think that the biggest life lesson is to listen to people in terms of where they’re at in their head. And don’t try to talk them out of something that might be their actual reality. I know that people have their own fear, but set that aside and try to put yourself in somebody else’s place.

Charity Matters: How has this journey changed you?

Dana Pepper Bouton: There are two big changes. One is that I had the arrogance of aging, I thought I would live as long as my grandmother, who lived almost to the age of 102.  I assumed it would be just like that. And that was very arrogant on my part. I’ve learned in the last six years or little over five years, I guess, that was just very presumptuous of me. And I’m quite humbled and I find that now to be a blessing. And I also think it’s funny. 

I think my sense of humor has gotten quite rivaled.  The other thing is that I’ve had to learn to slow down and not be busy, which I really liked. But I’ve  accepted the fact that I can slow down. If I’m in pain, it’s okay to lay back down and listen to podcasts like your podcasts, and audiobooks and dream. My imagination has become so acute because I’ve been forced to lay down, forced to take a break. I willed myself to pivot and it took a while. And I’m proud that I had the strength although it took a long time to finally accept, don’t find it pivot. Find those blessings, and there’s new magic.

 

CHARITY MATTERS.

 

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Pablove

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

Here are some highlights from  our conversation:

Charity Matters: What was your background before starting Pablove?

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

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

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

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

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

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

Charity Matters: Where did you start?

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

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

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

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

Charity Matters: Tell us the success you have had?

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

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

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

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

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

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Looking back: My Hope Chest

” When you come to the edge of a forest and there is no path-make one that others will follow.”

Author unknown

I couldn’t let October come to an end without discussing Breast Cancer. You may remember a few years back,  I interviewed an amazing nonprofit founder and breast cancer survivor, Alisa Savoretti. Since that interview, I have had four friends who have undergone mastectomies. Breast Cancer isn’t something that only happens in October it is something that happens every two minutes, every day. One in eight women will develop breast cancer over the course of her lifetime according to the American Cancer Society. Breast Cancer does not discriminate from the rich or the poor. To be honest I had never thought about what happens when you get breast cancer and have no insurance? I assumed that Medicaid and Medicare covered everything. Well, I was wrong.

Nonprofit founder, Alisa Savoretti, had breast cancer, a mastectomy and no insurance for reconstructive surgery. The result was the creation of My Hope Chest, a nonprofit that helps to fund their reconstructive surgery. Alisa and I had an incredible conversation that left me feeling inspired by this amazing warrior who fights for women who truly need one. She has left such a lasting impression on me that I wanted to re-share her story.

Charity Matters: What was the moment you knew that you needed to act and start My Hope Chest?

Alisa Savoretti: Hearing you have cancer is a devastating moment. It’s one thing to hear you have cancer but it is another thing to realize you have cancer. It’s another to realize you do not have insurance and you do not qualify for Medicaid. This is what happened to me at 38 years old. I had been working in Las Vegas as a showgirl and had recently moved to Florida to begin an online furniture business, before companies like Pottery Barn existed. I had borrowed funds on credit cards to launch Retrohome.com in 1999 when I found out I had cancer. The doctor said to take care of the cancer, focus on surviving and worry about the reconstruction later. 

I survived but lived without my breast for almost three years. You have no idea what this does for you as a woman, for your mental well being. During those three years, I reached out to organizations all over the country, government, nonprofit, anyone who could help me to become whole again. I discovered that there wasn’t anywhere to go. I felt deformed, depressed, frustrated, had metal anguish and enormous financial stress.

I went to Vegas to work at The Rivera. The 1998 government law now mandated that their group policy could not decline me insurance in order to get my reconstructive surgery. I realized how my own self-esteem, confidence, and self-worth as a woman returned when I could look in the mirror and could see my whole physical being once again. It was my healing, a restoration in body mind and spirit.

While I was in Vegas, I volunteered for a NAWBO (National Association of Women’s Business Owners) event. I told the women from NAWBO my story and these women rallied around me and with their help, I was able to start My Hope Chest. Six weeks later, I  had my 501c3 on December 3rd, 2003. We will celebrate our 15th anniversary this year.

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

Alisa Savoretti: Some days it feels as if I am pushing a boulder uphill with a toothpick. After fifteen years of doing this at the grassroots level, the work is very hard. What fuels me is knowing that thousands and thousands of women are missing their breast and this shouldn’t be happening in our country. Making women whole again is our mission. I think about more women are surviving breast cancer and that’s true. What about their quality of life if they are not whole?

These women are sick and often lose their jobs because they can’t work. They are now disfigured, deformed and depressed. The ripple effect of not being whole is devastating on marriages and families. This work has become my life’s mission. I am not married, cancer made children no longer an option and for the past fifteen years, this work has been my life.

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

Alisa Savoretti: We pick up where the government programs leave off. That is why we exist.  Our biggest referrals come from nonprofits such as the American Cancer Society, Susan G. Komen, and Care.org.  We get referrals from them weekly and we can not tell our clients if or when they are going to be helped. They sit on a waitlist while we try to raise the funds to make their reconstructive surgery happen. Helping women to become whole again is what fuels me and just knowing that there is always a list of women waiting for us to find the funding.

I know that we have made a difference when we can help them with whatever they have asked for and the letters they send us.

Charity Matters: Tell us what success you have had?

Alisa Savoretti: We help women every year in a small way and I feel blessed that God picked me to do this task. Every time we get the word out about our work it helps fund someone’s surgery. Shining a light on this cause is SO important. We have been able to fill a gap where other breast cancer charities leave off. If there was another organization doing our work we wouldn’t do it, but sadly there isn’t anyone else. The women we help are eternally grateful for all we have done and to me, that is the success.

Charity Matters: What is your vision for My Hope Chest going forward?

Alisa Savoretti: We will only exist until there is a cure for breast cancer. Of course, the big dream is that there is a day when our services are no longer needed. Ten years from now, I dream that we have enough resources, funding, surgical partners and angel warriors that we can help women as quickly as they are referred to us. I dream of no longer having a waitlist and being able to have a more efficient meaningful impact on these women’s lives.

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

Alisa Savoretti: God had a different plan for my life. I have a quote on my desk that says,” When you come to the edge of a forest and there is no path-make one that others will follow.” I feel like that is what happened with My Hope Chest. My life’s lesson is that when you persevere you will make a difference. The fact that this even exists in 2018 and is still flying under the radar and that there are women, thousands of women in this country living without their breast.  My home has been refinanced three times to keep the funding going for My Hope Chest. I have taken extra jobs at the grocery store to fund this. The lesson I have learned is that I have to persevere to help these women in any way I can. I cannot give up on them.

I think that changing even one life is important. Things are bigger than us, this mission is bigger than me and I have tied my life to making a difference. For me, I am grateful I was chosen for this journey. I am grateful to keep doing this work and I pray the Lord that My Hope Chest gets to leave a legacy on this earth until there is no longer a need for our services. That is my utmost prayer.

In the end,  I know that I have done my very best.

 

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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Melanoma, looking twice

Summer is in full swing and that means the sun is strong. I was recently at the dermatologist getting checked out. My visit reminded me of this conversation a couple years back. So I thought I would re-share it again today for all you sun lovers.

Growing up in LA, Marianne Banister was a familiar face on daily on our local ABC news station. She was always reporting from a storm, a flood, a fire…some sort of disaster. When a friend suggested that I reach out to interview Marianne, who now lives in Baltimore, I was a bit intimidated. Marianne and her husband lost their 17-year-old daughter Claire to melanoma.

Their family was determined to fulfill  Claire’s vision to provide clarity and hope in the fight against adolescent and young adult melanoma through their work at the Claire Marie Foundation. They are on a mission to ensure awareness, education, and prevention of cancer that has increased 250% in the last forty years.

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. 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 deaths in young women 25 to 30. For young people, this disease is more aggressive and invasive than in older people.

We’re the only nonprofit in the country that focuses on preventing melanoma specifically in adolescents and young adults. We are not trying to treat it and we’re not doing research to find an answer to find the new drug or the therapy. Nobody’s helping to prevent it and that’s our job.

CMF Five Year Retrospective 2019 from Claire Marie Foundation on Vimeo.

Charity Matters: Can you tell us what the risk factors of Melanoma are?

Marianne Banister Wagonhurst:  If you wear sunscreen, if you wear up 50 SPF clothing,  if you don’t go to a tanning booth and if you advocate for yourself. That’s it, then you’re good. I want to add empower yourself to advocate and get at the front of it. Our whole goal is to get people in and connect them with a dermatologist. If you don’t already have a patient relationship with a dermatologist, it can take three to five months to get your first appointment. 

Charity Matters: Can you share some of Claire’s Journey?

Marianne Banister Wagonhurst: Claire got a routine skin exam at 13.  Every year we had them checked and had no history in the family. We had lived in Southern California and being a reporter I was aware of it. We went back six months later for her yearly exam. About a week before that the mole on her ankle that she was born with started to change. However, it didn’t look like what we’re educated to look at for melanoma. It wasn’t thick, it wasn’t dark. The borders were not irregular, none of that it just looked a little dusty gray in color. Unfortunately, it was a melanoma. 

About her junior year when we thought we were well past Claire said, “Mom, why do you think this happened to us?” I said, “Maybe being who you are because you’re so positive and energized. And being what I do professionally, you know, maybe we can do this together when you’re ready?” Claire said, “Yeah, when I’m a senior, then it won’t matter. And I can advocate.”  

She still was not quite there yet wanting to share her story. So we knew down the road, that’s what she would want to do. The bottom line is I just couldn’t sit here with this information and not warn other parents. If someone had raised the flag of awareness before us, then maybe she’d still be here.

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

Marianne Banister Wagonhurst:  We started with community support and  launched in October 2014.   Claire’s friends from her school wanted to help and do something.  One of her best buddies since childhood called me and said,” Hey, Miss Marion, do you have a logo?”  I was like, Why? I mean, we knew we were going to do something, but we are just trying to get through the grief and to deal with things.

Claire’s friends did this dance a THON and raised $24,000 called Moves for Claire. I didn’t know how many people my daughter knew.  There were 500 kids there and they had sponsorships. We realized they’re listening and paying attention now, so we need to take advantage of this. If we wanted to do this in her memory, we had to do it quickly. Her friends have been our biggest force.

So because of them we then went forward. We have collegiate ambassadors, who started the program.  They were in the high school class of 2015 and the college class of 2019. Almost one hundred of them are now  on 46 campuses. Each of them are doing peer to peer education, mentoring and awareness programs.

My husband cycled 620 miles to symbolically take her to college. Claire was accepted to college just a couple of days before she passed. So she got accepted to Georgia, Southern University, Alabama. So he cycled from Charleston to Georgia Southern into Bama. We did this big media raising campaign and because it was a football game that she promised her dad he could go with her. It was a way of him to process it and honor her. In addition, it was a way for us to raise awareness. 

The kids came up with a lot of these ideas. Today, we have partnerships with US lacrosse and we work with the Melanoma Research Foundation. Our organization has been to Capitol Hill to campaign for funding and support for research. We are developing a partnership with Teen Cancer America. If a young person is going through cancer, guess what that puts them at elevated risk for melanoma.

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. If I don’t keep this foundation going and do the work that needs to be done, then I’m not fulfilling her purpose.  That means we would have lost her for no reason.

She has changed lives and she has saved lives. We have had a number of young people who have found melanomas early and they always tell me,” You know, I thought of Claire, and I went and got it checked and it was a melanoma.”

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

Marianne Banister Wagonhurst: My husband always says if we save one kid, we’ve done our work. We’ve done that many times over. I think what I’m most proud of is we’re changing the narrative.  Because of us, many organizations are now creating a Young Adult adolescent melanoma focus.  In six years, we’re starting conversations, and making people understand that it’s just not a matter of putting on sunscreen, and calling it a day.  It’s elevating the importance and value that young people are getting this disease to the rate they are and that it is not rare.

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

Marianne Banister Wagonhurst:  The dream would be that every young person from two-years-old on should incorporate full-body dermoscopy-based skin screenings every year, as part of their WellCare. When they go to their pediatrician and their eye doctor and their dentist, they see the dermatologist, they get checked, that becomes part of their routine.

 We just don’t want anybody else to go through what we did, because it’s so darn preventable. When you think about it, melanoma is one of the cancers that you have the best odds of seen visually externally on your body. A screening takes 10 minutes.  You don’t have to drink anything, don’t have to get an MRI and you don’t have to get a CAT scan. All you need is 10 minutes with a dermatologist with a scope. 

Charity Matters: How has this journey changed you?

Marianne Banister Wagonhurst: I think one of the changes that surprised me is you get a different identity. You realize that you cannot go back to life as it was because it’s no longer there. So you have to recreate yourself. I’m in a different world.  So I’ve expanded the people in my life.

 I’ve had a lot of loss in my life.  I’ve always lived my life as you have to thoroughly embrace it each day as it is. My faith is stronger than ever because I know she’s fine. I know she’s okay. 

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

Marianne Banister Wagonhurst: We’ve been asked this by other parents often how we dealt with the grief. We just had to dig down to this just horrendous feeling and we had to feel but then able to come out the other side. And it seems like to me that at some point of grief you have to process this pain. I think for me because I always remembered that conversation we had about Claire helping others, I know she would be proud of this.  

It’s not that you ever want this to happen, but if it does, to know that something has been inspired by her in a positive way. That’s what we look at.  Our daughter is having a great impact because of what we’re doing and that’s the best we can do for those we love.

 

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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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!

 

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Episode 28: Pancreatic Cancer Action Network (PanCAN)

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

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

Here are a few highlights from our conversation:

 

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

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

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

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

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

Charity Matters: What Have been your biggest challenges?

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

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

Julie with Patrick Swayze’s widow, Lisa Swayze

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

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

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

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

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

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

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

Charity Matters: How has this journey changed you?

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

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

CHARITY MATTERS.

 

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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

 

 

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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.

 

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Episode 15: Infinite Strength

I have met so many people in a decade of interviewing nonprofit founders but a select few have left a real lasting impression and Roberta Lombardi of Infinite Strength is one of them. We hadn’t spoken in a few years and I wanted to touch base and see what she was up to, you may remember her remarkable story. As a breast cancer survivor, Roberta wondered about the women she sat with in treatment who didn’t have the same resources she did and was determined to change that.

Infinite Strength began to help underserved women with breast cancer with the financial costs associated with breast cancer. are astronomical. I recently had a chance to catch up with Roberta and talk about how Covid has impacted cancer, single moms, her challenges in trying to support all of the above with her incredible organization.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Infinite Strength does?

Roberta Lombardi: We exist mainly to help single mothers who are in active treatment for breast cancer by giving them grants for what we call basic human needs, mortgage, and rent, car, utility, and phone.  I think we’re one of the few nonprofits to do that recurring funding for women with metastatic breast cancer. These are early-stage breast cancer patients who come to us once in a calendar year.  A patient with metastatic breast cancer, who’s basically going to be in treatment for the rest of their life. Their average lifespan at that diagnosis is two to three years.

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

Roberta Lombardi:  I was in the middle of treatment, and was getting more depressed from all the chemotherapy drugs and the steroids and the loss of hair. One day my husband walks into the kitchen and says, “Honey, we just got a bill for one of your chemos from insurance. But it’s $80,000!  Hon, how do people that don’t have money afford this?”  He throws the bill on the counter and it was like a lightning bolt for me.

All of a sudden, it really made sense to me.  How are these women ever going to be able to stop the cycle because it is a never-ending cycle? The woman we help, they’re already having trouble financially anyway.  How do you get off the roller coaster?

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

Roberta Lombardi: Every single time I have felt a little bit worn out that’s when somebody crosses my path. It reminds me that this is why I do this work.  And it’s the truth. It’s either it’s a patient who’s contacted me, and their story just touches me. It’s meeting their children and seeing what it does to the kids to have their mother ill.

 The women that we support with Infinite Strength, their whole life’s been a battle, they just don’t get a break.  Many of the women we help are black women and are underserved.  They don’t have the access to medical care and this disease hits them harder. Their death rate is higher than a woman that’s white. A lot of these women that I interact with, they’ve just not had a fair shot in life and a lot of things and they’ve struggled. Their kids are a part of this and that’s the heartbreaking part for me. I have to find a way to really make an impact and to give these kids hope that their mom’s going to be okay. Also to remind them that there’s kindness in the world that somebody cares.

Charity Matters: What has your impact been? 

Roberta Lombardi: For me, it’s the emotional impact of the peace of mind, we’re giving to these women. That’s how I measured it. The kind words that they write or when their child says something to me. That is when I know what I’m doing is very worthwhile. And that’s what spurs me on to keep going and to keep growing.

How has this journey changed you?

Roberta Lombardi: I think that one of the biggest lessons I’ve learned is not to be so judgmental. You don’t know what somebody else’s life is. They show you what they want to show you and you don’t know what they’re going through. Right? You just don’t. The more somebody is maybe aloof or maybe not as kind, maybe the more kind I am because they need it. I’ve realized in my work, just that little bit of kindness or a smile, or doing something extra makes a person’s day so much better. And you don’t know where they were at that moment.  It’s little things of trying to be understanding.  I think that’s one of the greatest lessons that I’ve learned.

CHARITY MATTERS.

 

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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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Cancer

Claire Marie Foundation

Growing up in LA, Marianne Banister was a familiar face on daily on our local ABC news station. She was always reporting from a storm, a flood, a fire…some sort of disaster. When a friend suggested that I reach out to interview Marianne, who now lives in Baltimore, I was a bit intimidated. Marianne and her husband lost their 17-year-old daughter Claire to melanoma.

Their family was determined to fulfill  Claire’s vision to provide clarity and hope in the fight against adolescent and young adult melanoma through their work at the Claire Marie Foundation. They are on a mission to ensure awareness, education, and prevention of cancer that has increased 250% in the last forty years.

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.

We’re the only nonprofit in the country that focuses on preventing melanoma specifically in adolescents and young adults. We are not trying to treat it and we’re not doing research to find an answer to find the new drug or the therapy. Please, I pray to God we find that tomorrow.  Nobody’s helping to prevent it and that’s our job.

CMF Five Year Retrospective 2019 from Claire Marie Foundation on Vimeo.

Charity Matters: Can you tell us what the risk factors of Melanoma are?

Marianne Banister Wagonhurst:  If you wear sunscreen if you wear up 50 SPF clothing if you don’t go to a tanning booth and if you advocate for yourself. That’s it, then you’re good. I want to add empower yourself to advocate and get at the front of it. Our whole goal is to get people in and connect them with a dermatologist. If you don’t already have a patient relationship with a dermatologist, it can take three to five months to get your first appointment. 

Charity Matters: Can you share some of Claire’s Journey?

Marianne Banister Wagonhurst: Claire got a routine skin exam at 13, it was November. We had them checked every year, no history in the family, just having lived in Southern California being a reporter being aware of it. We go back in June for her yearly exam and about a week before that the mole on her ankle that she was born with started to change. But it didn’t look like what we’re educated to look at for melanoma. It wasn’t thick, it wasn’t dark. The borders were not irregular, none of that it just looked a little dusty gray in color.

Claire kept it very quiet and to herself because she didn’t want to be put on a shelf with her friends. She didn’t want to have gossip and didn’t want to engage. Claire wanted to deal with it and went out and lived her life. We were very fortunate to live where we do, where we had renowned medical support 10 minutes away.

About her junior year when we thought we were well past it, her oncologist, Dr. Sharma asked her if she would mentor another young girl who had come in the month that Claire was diagnosed.  As we were discussing his request for her to help this other young person coming through it. She said, “Mom, why do you think this happened to us?”

I said, “Maybe being who you are because you’re so positive and energized. And being what I do professionally, you know, maybe we can do this together when you’re ready?” Claire said, “Yeah, when I’m a senior, then it won’t matter. And I can tell people, and I can advocate.”  She still was not quite there yet wanting to share her story. So we knew down the road, that’s what she would want to do. The bottom line is I just couldn’t sit here with this information and not warn other parents. If someone had raised the flag of awareness before us, then maybe she’d still be here.

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

Marianne Banister Wagonhurst:  We started with community support. We got launched in October 2014, it will be six years ago this month. Claire’s friends from her school wanted to help and do something.  One of her best buddies since childhood called me and said,” Hey, Miss Marion, do you have a logo?” And I was like, Why? I mean, we knew we were going to do something, but we are just trying to get through the grief and to deal with things.

Claire’s friends did this dance a THON and raised $24,000 called Moves for Claire. I didn’t know how many people my daughter knew. And then friends of other friends and her story carried. There were 500 kids there. And they had sponsorships, and I mean, they went all out. We realized they’re listening and paying attention now. So we need to take advantage of this. If we want to do this in her memory, we have to do it while they want to engage. And they have been our biggest force.

So through them, we then went forward, we have collegiate ambassadors, and they started the program for so they were in the high school class of 2015, college class of 2019. We’ve had just short of 100 kids on 46 campuses. And they do peer to peer education and mentoring and awareness programs.

My husband cycled 620 miles to symbolically take her to college. Claire was accepted to college just a couple of days before she passed. So she got accepted to Georgia, Southern University, Alabama. So he cycled from Charleston to Georgia Southern into Bama. We did this big media raising campaign and because it was a football game that she promised her dad he could go with her. So you know, it was a way of him to process it and honor her, but it was a way for us to raise awareness. We started doing that and running fast.

The kids came up with a lot of these ideas,  they’re all young adults now. We have partnerships since with US lacrosse and we work with the Melanoma Research Foundation, as one of their advocacy partners. We go to Capitol Hill and campaign for funding and support for research. We are developing a relationship and a partnership with Teen Cancer America out in LA. we want to bring our screening program out there, if a young person is going through cancer, guess what that puts you at elevated risk for melanoma.

Charity Matters: What are your biggest challenges?

Marianne Banister Wagonhurst: The biggest challenge for all this is that we’re the only ones out here doing it. We’ve screened 1000 young people, we found 16% have A typical moles that need a biopsy. Funding is still a big issue. We could use a staff of two full people, two full-time people. You know, it’s just me and my husband and the volunteers that pop in and out and help us out.

Secondly is getting our information out there. Awareness education, like this event we’re doing October 3rd, we always try to reach young people in the way that they’ll hear us.  It’s a two-hour Music Festival, with performers from LA Nashville, Baltimore, and Charleston. It’s really it’s a lot of fun. Then of course within that, we’ll have the melanoma prevention messaging built within it.

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.

When people ask me how many children do you have, although it will be followed by an awkward moment. I just say well, I have two girls, one watches out for me from heaven and the other one is with me here.  I’m not going to say only have one daughter, that’s not going to happen because she existed and she had a purpose. She has changed lives and she has saved lives. We have had a number of young people who have found melanomas early and they always tell me,” You know, I thought of Claire, and I went and got it checked and it was a melanoma.”

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

Marianne Banister Wagonhurst: My husband always says if we save one kid, we’ve done our work. And we’ve done that many times over. I think what I’m most proud of is we’re changing the narrative. We’re changing the focus, Claire was overlooked, she was a victim of the system. The system is not broken, but it needs to be tweaked.

Because of us, many organizations are now creating a Young Adult adolescent melanoma focus, in terms of research, and in terms of treatment and support. I know specifically within the melanoma world, we’ve changed that narrative. I think that is what I am most proud of in six years, we’re starting conversations, and making people understand that it’s just not a matter of putting on sunscreen, and calling it a day.  I think it’s changing the narrative of the conversation and elevating the importance and value that young people are getting this disease to the rate they are and that it is not rare.

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

Marianne Banister Wagonhurst:  The dream would be that every young person from two-years-old on should incorporate full-body dermoscopy-based skin screenings every year, as part of their WellCare. When they go to their pediatrician and their eye doctor and their dentist, they see the dermatologist, they get checked, that becomes part of their routine.

 We just don’t want anybody else to go through what we did, because it’s so darn preventable. When you think about it, melanoma is one of the cancers that you have the best odds of seen visually externally on your body. And a screening takes 10 minutes, and you don’t have to drink anything, and you don’t have to get an MRI and you don’t have to get a CAT scan, you just go in a robe, 10 minutes, a dermatologist with a scope. So we just need to it’s a system that’s broken, it needs to be readapted so that would be my dream.

Charity Matters: How has this journey changed you?

Marianne Banister Wagonhurst: I think one of the changes that surprised me is you get a different identity, you realize that life is you cannot go back to life as it was because it’s no longer there. So you have to recreate yourself. I’m in a different world.  So I’ve expanded the people in my life.

 I’ve had a lot of loss in my life and I’ve always lived my life as you have to thoroughly embrace it each day as it is. My faith is stronger than ever because I know she’s fine. I know she’s okay. I absolutely know because I’m telling you as smart as I like to think I am. I am not that brilliant.

This foundation has a life of its own. And as my older daughter says,” Claire will be done with it when she’s tired of Claire show.” Until then, it’ll just keep happening things that just drop in our lap. Opportunities that come up or people we meet that just really like jumpstart us into a new phase. And it’s just like, okay, she’s not done with the Claire show just yet. 

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

Marianne Banister Wagonhurst: We’ve been asked this by other parents often how we dealt with the grief. We just had to dig down to this just horrendous feeling and we had to feel but then able to come out the other side. And it seems like to me that at some point of grief you have to process this pain. I think for me because I always remembered that conversation we had about Claire helping others, I know she would be proud of this.  

It’s not that you ever want this to happen, but if it does, to know that something has been inspired by her in a positive way. That’s what we look at.  There was nothing she could have done to control this or affect it and so when that happens, it’s kind of like well, what do we do with this now? Our daughter is having a great impact because of what we’re doing and that’s the best we can do for those we love.

 

 

CHARITY MATTERS.

 

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Cancer

We Lift You Up

A few months ago before the world went mad, and in the early weeks of COVID, I had the opportunity to talk to Lisa McKenzie, the most extraordinary human. Lisa began her career as an events planner and entrepreneur. Life had a different plan for her. Lisa was running a company called Ooh La Bra when her life took a turn. Using all her gifts in business and event planning came this opportunity to make an enormous difference for women recovering from cancer. Lisa founded the We Lift You Up Fund with multiple programs to support women recovering from cancer. She is a true inspiration and a bright light in our crazy world.

Charity Matters: Tell us a little about what We Lift You Up Foundation does?

Lisa McKenzie: We create empowering group experiences for women with cancer. For a lot of women, the scary part is when they are released from the care of their physicians and friends think they are “cured.” The survivor feels like she came back from a war zone and she is still in the trenches.

Their bodies might be totally mutilated, or their relationships are severed, and now they’re living with the constant fear of recurrence. And then, of course, just the damage it does to a lot of families financially,  just to the family structure itself, the kids are scared, and so, we are that part that picks up from that point. Doctors and hospitals will refer the patients to us because they don’t have time to deal with the emotional struggle, right? So if they’re sitting in a waiting room with a woman, and she starts expressing any kind of fallout, they’ll say, call We Lift You Up and so our organization is comprised of all survivors, and by the way, I’m not one.

Get acquainted with You Night from You Night Events, LLC on Vimeo.

Charity Matters: Wow, that is so interesting. So What was the moment you knew you needed to act and start  We Lift You Up?

Lisa McKenzie: My mom is a cancer survivor but actually I have two friends who were the catalyst for all of this. So I was watching these two women who were movers and shakers in society completely confident, you know, going along with their lives and often they both got cancer and they totally changed, their physique changed, their confidence changed. Meanwhile, though, I had just come out of two years of total darkness because my marriage crumbled, my husband had cheated on me. And I went from this peppy person, a leader, confident and happy, and then all of a sudden I was dealing with clinical depression.

 Over time little resources, like the book The Power of Intention by Wayne Dyer started filling my mind with truth. I woke up one morning knowing that I didn’t want to feel miserable anymore. I had been a prisoner of my own mind and I began to find positive messages to retrain my mind and I began listening to podcasts and read books with positive messages

God still had a perfect story for me. I was running an accessory company and the tag line was, “We lift you up.” I wanted to do a runway show to model my product and I decided to use my friends who had had cancer and that was the beginning of You Night. After that first runway show, I approached the hospital and said I would love to gift this experience to cancer survivors. These survivors walked a runway in front of 500 people, their families, doctors, and nurses cheering them on. 

You’re like you’re cheering for these ladies, not because they have a pretty gown on or because their hair looks beautiful, right? They have fire in their eyes. That is like, you just you could feel it in the air. There’s so much energy coming from these ladies.  So it’s like a pay it forward program because in the audience are the women who are bald and defeated and thinking I’ll have whatever that runway model just had. 

Charity Matters: What are your biggest challenges?

Lisa McKenzie: I’ve always wondered why can’t people collaborate who are doing good things? Why does this happen?  When you offer something for free in emotional support sometimes we can end up with more than we can handle. If we are doing the best work we can to serve humanity then why are we judged for our overhead as nonprofits? My motivation is so pure, why would people question your intentions?  These challenges became the catalyst to stay in my lane and stay the course.

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

Lisa McKenzie:  The women. I have actually heard women say, “I’m glad I got cancer so I can join this organization.” Oh my God, because they have learned things about themselves that would have never been possible. And one of them who had stage four cancer said, “I wasn’t giving myself permission to smile anymore because I’ve labeled myself as a stage four cancer survivor. I thought that that’s like my death sentence and my black cloud.” Now she said, because of us now she can smile. We provide opportunities for people to find their smile again and say, yes, you do still have permission to enjoy life. 

My other inspiration are the children who come to see their mother’s walk the runway. So there was this little girl she was probably eight years old and her mom is a mom of four really who was really sick,  like 70 tumors, and struggling. But this little girl followed her mom the whole way down the stage, and then followed her mom back. When she went home that night, she got this box and scissors and fabric and her Barbies. Her mom’s said, “What are you doing?” She said,” I want to design gowns for Barbies that make them feel as beautiful as you looked on stage.” Oh my god, the stories.

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

Lisa McKenzie: I will tell you because there are endless stories of women’s lives we changed, like just to give you an example, a woman who calls and is suicidal and comes to the very first meeting and has her shoulders slumped and she’s got a chemo beanie on and she’s looking down at the ground. Then, slowly but surely you start seeing week after week and get together after get together, her posture changes. And then after she graduates, and after they get all this encouragement and attitude they want to go forward and be part of the organization. So I have 50 volunteer participant leaders who are all not on the payroll and are graduates of the program..

We sort of realized that our empowerment experience is a two year experience, the first year is giving them back their own self-esteem and their life and their attitude. And then pulling out you find out so many things about them like they’re amazing skills, and these are women are not defined by cancer.

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

Lisa McKenzie: Give people a literal platform. We have done 14 runway shows in seven years with two classes of fifty women a year. The show is a huge celebration. We show photos from their worst moments and the most painful pictures of their journey. The storytelling allows them to be real and the oncologist says they can tell the difference between women who have been through You Night vs those who have not.

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

Lisa McKenzie: To have a women’s conference, Tony Robbins style and fill a stadium with cancer survivors. Scaling to grow the You Night runway to raise awareness for emotional care in survivorship.

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

Lisa McKenzie:  The first lesson is that I can leave a legacy for my daughter by showing her by example that you can use your talents and skills to help others. I can plant a seed of compassion in my children to carry on for generations.

The second lesson is that we live in one of the kindest worlds you can imagine. I can not believe how many really good people there are who want to help. I have never seen so much love and kindness back and forth between people. The love is the addiction. 

Charity Matters: How has this journey changed you?

Lisa McKenzie: I have learned to be more organic in how life unfolds. You can have a pity party and be at peace at the same time. I’m learning to let God unfold the story at his pace.

 

CHARITY MATTERS.

 

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Cancer

The heroes of 2019

“Nothing is given to man on earth – struggle is built into the nature of life, and conflict is possible – the hero is the man who lets no obstacle prevent him from pursuing the values he has chosen.”

Andrew Bernstein

There is nothing I love more than meeting new people. To me, each new person that I come across is like unwrapping a gift. I love learning people’s stories and what makes them tick. Meeting someone new is a never-ending source of joy for me. Some people collect certain things, I collect people because to me they are what matter. This past year I am so excited about the people that WE met at Charity Matters. When I meet amazing people so do you. Who wants to open a gift and not share it? So before we look ahead to 2020 I wanted to take a brief moment and look back at some of the extraordinary humans and their organizations that came into our lives this year.

We began 2019 with Tracy’s Dogs. The founders of Tracy’s Dogs, Tracy and Scott Whyatt, a Texas-based nonprofit that rescues thousands of dogs and partners them with new homes said to me, “People don’t find dogs, dogs find people.” Two weeks after that interview a dog from Texas named Lucy found us. An unexpected blessing of 2019 and the gift that keeps on giving. As they say, “Charity starts at home.”

photo credit: Classic Kids

Animals were not the only last legacy from the year. We met amazing women who turned their life challenges into thriving nonprofits. The remarkable Becky Fawcett who learned what it cost to adopt a child and turned it into her life’s mission to help families fund adoption with Help Us Adopt.

Jill Ippolito who showed us the power of love and healing with her inspirational work in juvenile halls with trauma-informed yoga with her nonprofit Uprising Yoga. Teaching and training minors in jail to learn how to process their trauma and break the cycle of pain. Jill used her past experience to help reform prisons across the country and heal generations of children who have experienced trauma and inflicted it on others to learn a new path towards healing. Jill is a truly lovely human and reminded me that whatever gift it is that we have, we need to share it with the world.

Then there was Marcella Johnson who lost a child at birth and used that pain to fuel her nonprofit The Comfort Cub. Marcella and her team provide healing weighted stuffed teddy bears/Cubs to help those mothers who grieve. We had such an incredible conversation that we set up lunch after and a friendship was born, she is a truly special human.

Marcella wasn’t the only new friend made in 2019, Roberta Lombardi the founder of Infinite Strength was so inspiring with her mission to financially assist women going through breast cancer pay for things such as daycare. We talked for over two hours and could have kept going. She is remarkable with her passion for serving and supporting these women and a true girls girl. I adored getting to know Roberta.

This year was not just about the girls, there were amazing men accomplishing unbelievable work, one of them was Seth Maxwell of the Thirst Project. At 19 years old Seth discovered how many people on this planet live without clean drinking water and made it his life’s mission to change that. Now at almost 35, he has. Seth’s organization has actually taken that number from 1.1 billion people without access to clean drinking water to 663 million and he is still going strong. More than that Seth is using his passion to inspire thousands of high school students across the country to join him in his mission.

Speaking of missions we met Colin Baden, the former CEO of Oakley sunglasses turned nonprofit founder, who continues to find ways to use technology to support Veterans with Infinite Hero Foundation. Colin’s humility and commitment to our Veterans left a lasting impression on me and the thousands that he serves. Our conversation left me in awe and reminded me that true heroes serve from a place of humility and Colin is a true hero.

While we met so many incredible and inspiring humans this past year there was one person whose positive attitude, commitment to joy and service left an indelible mark on me. His name is Hal Hargrave and he is the founder of The Be Perfect Foundation. Hal is a paraplegic and his organization works to help provide wheelchairs, cars, physical rehabilitation and a list of services for those with spinal cord injuries. Hal is someone who chooses joy and to live his life in the service of others.

All of these nonprofit founders serve humanity each and every day in so many different ways. I loved every single person I had the privilege of meeting this year and I loved introducing them to you just as much, I wish I could highlight them all here. 2019 was an amazing year and I am excited about what this New Year and decade will bring.

I think the perfect way to wrap up 2019 is with a quote from Hal Hargrave. I think Hal speaks for all the remarkable nonprofit founders and heroes when he said, “I fear not being on this earth more than anything because I know there is more that I have to give to this world and that I have more in the tank. I have an opportunity to either live life for myself or for others. It is an easy decision every day to live my life for others. The most interesting thing about it is that I am always the benefactor, whether it is a smiling face or a new attitude. It makes me a better and more aware person each time this happens. “

Wishing you a Very Happy New Year!

Charity Matters.

 

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

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Cancer

My Hope Chest

” When you come to the edge of a forest and there is no path-make one that others will follow.”

Author unknown

I couldn’t let October come to an end without discussing Breast Cancer. Last year I interviewed an amazing nonprofit founder and breast cancer survivor and since that interview, I have had four friends who have undergone mastectomies. Breast Cancer isn’t something that only happens in October it is something that happens every two minutes every day. One in eight women will develop breast cancer over the course of her lifetime according to the American Cancer Society. Breast Cancer does not discriminate from the rich or the poor. To be honest I had never thought about what happens when you get breast cancer and have no insurance? I assumed that Medicaid and Medicare covered everything. Well, I was wrong.

Last year, I had the most inspiring conversation with the nonprofit founder, Alisa Savoretti, a woman who lived this journey of having a mastectomy and no insurance for reconstructive surgery. The result was the creation of My Hope Chest, the only national nonprofit in the country that takes these women and helps to fund their reconstructive surgery. Alisa and I had an incredible conversation and I left feeling inspired by this amazing warrior who fights for women who truly need one. She has left such a lasting impression on me that I wanted to re-share her story.

Charity Matters: What was the moment you knew that you needed to act and start My Hope Chest?

Alisa Savoretti: Hearing you have cancer is a devastating moment. It’s one thing to hear you have cancer but it is another thing to realize you have cancer, you do not have insurance and you do not qualify for Medicaid. This is what happened to me at 38 years old. I had been working in Las Vegas as a showgirl and had recently moved to Florida to begin an online furniture business before companies like Pottery Barn existed. I had borrowed funds on credit cards to launch Retrohome.com in 1999 when I found out I had cancer. The doctor said to take care of the cancer, focus on surviving and worry about the reconstruction later. 

I survived but lived without my breast for almost three years. You have no idea what this does for you as a woman, for your mental well being. During those three years, I reached out to organizations all over the country, government, nonprofit, anyone who could help me to become whole again. I discovered that there wasn’t anywhere to go. I felt deformed, depressed, frustrated, had metal anguish and enormous financial stress.

I went back to Vegas to work at The Rivera and the 1998 government law now mandated that their group policy could not decline me insurance in order to get my reconstructive surgery. I realized how my own self-esteem, confidence, and self-worth as a woman returned when I could look in the mirror and could see my whole physical being once again. It was my healing, a restoration in body mind and spirit.

While I was in Vegas, I volunteered for a NAWBO (National Association of Women’s Business Owners) event. I told the women from NAWBO my story and these women rallied around me and with their help, I was able to start My Hope Chest and had my 501c3, six weeks later on December 3rd, 2003. We will celebrate our 15th anniversary this year.

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

Alisa Savoretti: Some days it feels as if I am pushing a boulder uphill with a toothpick. And fifteen years of doing this at the grassroots level, the work is very hard. What fuels me is knowing that thousands and thousands of women are missing their breast and this shouldn’t be happening in our country. Making women whole again is our mission. I think about more women are surviving breast cancer and that’s true, but what about their quality of life if they are not whole?

These women are sick and often lose their jobs because they can’t work. They are now disfigured, deformed and depressed. The ripple effect of not being whole is devastating on marriages and families. This work has become my life’s mission. I am not married, cancer made children no longer an option and for the past fifteen years, this work has been my life.

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

Alisa Savoretti: We pick up where the government programs leave off. That is why we exist.  Our biggest referrals come from nonprofits such as the American Cancer Society, Susan G. Komen, and Care.org.  We get referrals from them weekly and we can not tell our clients if or when they are going to be helped. They sit on a waitlist while we try to raise the funds to make their reconstructive surgery happen. Helping women to become whole again is what fuels me and just knowing that there is always a list of women waiting for us to find the funding.

I know that we have made a difference when we can help them with whatever they have asked for and the letters they send us.

Charity Matters: Tell us what success you have had?

Alisa Savoretti: We help women every year in a small way and I feel blessed that God picked me to do this task. Every time we get the word out about our work it helps fund someone’s surgery. Shining a light on this cause is SO important. We have been able to fill a gap where other breast cancer charities leave off. If there was another organization doing our work we wouldn’t do it but sadly there isn’t anyone else. The women we help are eternally grateful for all we have done and to me, that is the success.

Charity Matters: What is your vision for My Hope Chest going forward?

Alisa Savoretti: We will only exist until there is a cure for breast cancer. Of course, the big dream is that there is a day when our services are no longer needed. Ten years from now I dream that we have enough resources, funding, surgical partners and angel warriors that we can help women as quickly as they are referred to us. I dream of no longer having a waitlist and being able to have a more efficient meaningful impact on these women’s lives.

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

Alisa Savoretti: God had a different plan for my life. I have a quote on my desk that says,” When you come to the edge of a forest and there is no path-make one that others will follow.” I feel like that is what happened with My Hope Chest. My life’s lesson is that when you persevere you will make a difference. The fact that this even exists in 2018 and is still flying under the radar that there are women, thousands of women in this country living without their breast.  I have refinanced my home three times to keep the funding going for My Hope Chest. I have taken extra jobs at the grocery store to fund this. I have learned that I have to persevere to help these women in any way I can. I cannot give up on them.

I think that changing even one life is important. Things are bigger than us, this mission is bigger than me and I have tied my life to making a difference. For me, I am grateful I was chosen for this journey. I am grateful to keep doing this work and I pray the Lord that My Hope Chest gets to leave a legacy on this earth until there is no longer a need for our services. That is my utmost prayer.

In the end,  I know that I have done my very best.

 

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