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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 mentioned a couple of weeks ago that I had a friend who has recently undergone a mastectomy. Well sadly, since I wrote those words, yet another friend has experience the same loss and this time a double. 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 week, I had the most inspiring conversation with nonprofit founder, Alisa Savoretti, a women 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.

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 exsisited. 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 women, 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 Womens 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 thats 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 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 wait list 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 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 wait list 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.

 

Charity Matters

 

 

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Breast Cancer Research Foundation

In my world, the more people you have helped the bigger the celebrity you are. So last week when 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 to change 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 (the second most common cancer) by advancing the world’s most promising research. 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 and after our conversation I can see that cancer doesn’t stand a chance with this beautiful lady starring it down.

photo by Rob Rich/SocietyAllure.com ©

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

Myra Biblowit: We want to put an end to breast cancer and our goal 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 and 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 after seeing the pace at which breast cancer research was moving. Evelyn 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?” Evelyn had a soul and a heart that were enormous. She was working on the pink ribbon symbol and knew she could make this an ubiquitous symbol of the cause and 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 help her get BCRF off the ground. I was working at the Museum of Natural History at the time. 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 when I was working at NYU, I had had a few job opportunities arise and I reached out to Evelyn and Leonard Lauder for their advice as friends and 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 international, I would raise a lot more money and I would create a strategic thoughtful grant program to ensure that the dollars we are raising are wisely meeting the organizations targets.

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 and 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. Proof is in the pudding and 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 from 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, that 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 and each one has more in common with other forms of cancer than with each other. Today’s treatment have 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. We are one of the few engines who give resources to cutting edge researchers. We are the engine that tells researchers to take that chance. We are a rare funder in our flex-ability taking research down the path of greatest opportunity because the stakes are so high.

We devoted a fund to metastatic disease, when Evelyn died by creating a Founder’s Fund. We want to use that fund to find more about metastatic disease, we want to invest in young researchers and 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 peoples 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 everyday 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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The Clarity Project

 

Earlier this week I posted about losing legends, well it appears that on Monday, we lost another one. Her name was Claire Wineland and she was 21 years old. Claire was born with Cystic Fibrosis, a disease that creates an overabundance of mucus and ultimately results in respiratory failure. She grew up knowing that she was terminally ill and what we would think of as tragic, she simply used as fuel. Her message and life were truly remarkable.

Claire endured over 30 surgeries in her short 21 years and spent an incredible amount of time in the hospital. About six years ago, after being in a coma for over 20 days, flat-lining twice and being given a less than 1% of survival, Claire survived. She came out of the experience determined to help others with Cystic Fibrosis. From that near death experience began the creation of the Claire’s Place Foundation,whose mission is to relieve families financially with CF, to help with their rent, mortgage, car payments, etc.

The foundation became a way to celebrate Claire’s life. She once said,”It is important for people who are sick to feel empowered. It gives them a reason to take care of themselves.” And if that wasn’t enough, Claire decided shortly after in high school to begin a YouTube series called The Clarity Project, where she talks about topics such as how to talk to a sick person or even what it is like to live like you are dying.

Claire moved out on her own, decided not to go to college because she was not sure she would live long enough to graduate. She spent her time sharing her inspirational message doing Ted talks, running her foundation and recently partnered with Zappos to take on project similar to Once Upon a Room by decorating children’s hospital rooms in Las Vegas.

Claire’s message is a reminder to us all. If you give yourself one gift today, listen to Claire’s talk (above). She was a reminder to each of us how precious life is, how blessed we are to have our health and regardless of our circumstances, that someone always has less than we do.

Claire lived her life as an example to each of us. Even in her death her organs were donated to help over 50 people. In her last video Claire said, “Go enjoy your life. I mean really seriously, go enjoy it, cause there are people fighting like hell for it.” Claire’s legacy tells us that we not only have the power to help…. but more than that…..to live our lives fully.

Charity Matters.

 

Copyright © 2018 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Gordie, a story worth retelling…again and again

Gordie's story

Next week our son heads back to college.  He attends a big college football school where  weekends include tailgates, football games and the obligatory fraternity parties…..all of it fun and takes us back to our own college days. With so many students heading off to college this week I was reminded that the 14th year anniversary of Gordie Bailey’s death is coming up.  While I do not typically repost, I have shared his story every year because the lesson is invaluable and sadly, needs to be told over and over.

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

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

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

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

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

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

There has been at least one university hazing death each year from 1969 to 2017 according to Franklin College journalism professor Hank Nuwer. Over 200 university deaths by hazing since 1839, with 40 deaths from 2007-2017 alone and alcohol poisoning is the biggest cause of death. As Gordie’s mother Leslie said, “Parents more than anything want their dead children to be remembered and for their lives to have mattered.”

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

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

Charity Matters.

 

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Alzheimers

There is nothing I enjoy more than connecting friends and colleagues, especially when there is a good cause involved. So a few weeks ago when I connected two remarkable women, one a fundraiser for USC and the other a well known wealth strategist for Northern Trust, I was thrilled when I received the invitation for an event on Alzheimers the two partnered to put together.

It was a fantastic morning conversation with  Dr. Helena Chang-Chui, a world renown researcher and a top Alzheimer specialist. She is the chair of the Keck School of Medicine of USC’s Department of Neurology and has authored over 182 publications on the topic and was fascinating to learn from, which is why I wanted to share.

Every 66 seconds, someone in the United States is diagnosed with Alzheimers and chances are each of us knows someone who has been affected by this devastating disease. We learned that Alzheimers disease is the 6th leading cause of death in the United States and according to the Alzheimer’s Association there are currently about 5.5 million people currently living with the disease. Without successful treatments that number is projected to rise to about 13.5 million by 2050! The longer people live, the more Alzheimer’s disease there will be.

So that’s the bad news. Here is the good news:

The National Institute of Health recently allocated $1.3 billion to Alzheimer’s disease research which was $884 million more than ever before! Now the top researchers in the country Harvard, the Mayo Clinic and USC Alzheimer’s Therapeutic Research Institute will be working together with some of this funding to find a cure. In the meantime, Dr. Chui shared with us a few things we can all do to protect our mental health.

  1. Diet– A Mediterranean diet based on nuts, fruits, vegetables, whole grains, fish, olive oil, coffee and coconut oil has all proven to activate the brain’s metabolic function and may prevent or slow the onset of Alzheimers disease.
  2. Exercise– The brain’s processing speed can begin to slow down as early as 25 but exercise bulks up existing neurons and improves communication between brain cells. The Doctor said it is like a bank account where what you do now strengthens cognitive resilience later.
  3. Quality Sleep- Six to eight hours of sleep for adults is critical so that toxic proteins that are implicated in Alzheimers disease are flushed out during sleep. It is the bodies time of rebooting and sleep gives the body time to restore.
  4. Connect with Others-Relationships are good for the brain and the heart and current research suggest that there is a connection between social interaction and brain health. Being social connects neurons and activities with friends can give the brain added benefits.
  5. Managing Stress-High stress encourages behaviors such as poor eating habits, isolation, or decreased exercise all which increase the risk of dementia which could lead to changes in the brain.

The take away from this fantastic conversation with Dr. Chang-Chui was that we all need to proactive with our health and that includes our mental health as well. We can all take steps today to make tomorrow better for ourselves and our loved ones.

charity matters.

 

 

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The Foundation for Living Beauty

Have you ever seen someone walk into a room that radiates a bright light? That is exactly the impact that Amie Satchu has when she enters the room. It isn’t her physical beauty (which she has) but something bigger within that catches you immediately. When we met through a mutual friend recently at a lunch, I was not surprised to discover that she had founded a nonprofit, most appropriately called The Foundation for Living Beauty.

Amie and I had a chance to catch up earlier this week to discuss her inspirational journey and mission to provide women with cancer emotional, physical and spiritual support throughout their cancer treatment. The Foundation for Living Beauty uses a holistic approach to educate, uplift and empower women dealing with cancer whether newly diagnosed, in mid treatment or beyond.

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

Amie Satchu: In my early 20’s I started  a hair care line that specialized in wigs and hair extensions, that quickly gained notoriety in the ethnic hair care market. With that came hundreds of letters from women telling us that we had transformed their beauty by transforming their hair, many of whom had cancer. So, as a result of those letters I decided to start a nonprofit in 2005 to serve  these women.

The week after we received our 501c3 nonprofit status, my mother was diagnosed with Multiple Myeloma, a terminal cancer and given less than two years to live. I crawled into my mom’s hospital bed and told her we were going to get through this together. The Foundation for Living Beauty truly came out of providing her with a quality of life and each program was built out of her experience.

A few weeks later my mom (who was a social worker) and her two best friends were also diagnosed with cancer. The connection between these three women, the sisterhood and coming together truly formed the inspiration for the women we serve to find a place where they can thrive and heal.

charity Matters: Tell us a little about your work?

Amie Satchu: The Foundation for Living Beauty does over 30 events a year all 100% free to support women with cancer. We do wellness workshops, yoga for cancer patients and sisterhood support events. All of the support services we currently offer, address the complex needs my mother faces along her cancer journey and help women understand that the lifestyle choices they make can help them feel and live better.

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

Amie Satchu: My mother died four years ago and she lived eight amazing years after her diagnosis. I saw her emotional wellness after our events, seeing the impact of our work first hand. My mom is still the guiding light even though she is no longer physically with us. I see the impact from the women we serve, in their renewed sense of hope and well being, and that in turn supports their families through this journey. 

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

Amie Satchu: There are so many moments and people that remind me of the difference we have made in hundreds of peoples’ lives. One person that stands out to me is Sandra Yates Thompson (who is in the video below), we were not only able to help her through her battle but to support her and her family in ways that shifted her and all of us. Her heart was so beautiful and it is people like Sandra that inspire us to keep going.

Each life we touch reminds me of the importance of our work. We had a client named Cassandra who was a single mother, and an attorney who was such an inspiration that we had a donor create a Cassandra fund to help single mother’s with cancer.

Charity Matters: Tell us what success you have had? What has your impact been? Number  of people impacted, funds raised?

Amie Satchu: Our success is truly about each life we touch, whether the woman with cancer or her family. We currently serve 650 Living Beauties that are a part of our program. These women can attend over 30 events for free that focus on increasing their physical wellness and emotional stability while coping with cancer. 97% of our participants gain a new understanding of their body and immune system and 92% of the women we serve agree that they have more tools to strengthen and heal their body because of our program.

Amie with Olivia Fox, who was diagnosed with cancer in her early 20s
charity Matters: How has this journey changed you?  What life lessons have you learned from this experience?

Amie Satchu: This journey has changed me in so many ways. The exchange between the women we serve reminds me to live only in the present. Bringing hope into others lives, learning to be open and to make everyday count are invaluable experiences that have changed me. When I do those things I feel my mother’s presence and know this is where I want to be.

The life lesson I have taken from this journey is that what really matters in this lifetime are the connections you have with other souls. The positive things you do in this life are the only things you take with you and the only things that are truly important. Being with my mom at the end of her life for her last breath is a daily reminder that love is all that we have and all that matters.

charity matters.

 

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Copyright © 2018 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

The Butterfly Child

Every so often a rare magical beam of light enters our world, makes it brighter, shines an internal light so brightly on something important and then leaves this  world a little darker when it goes. This past week that is exactly what happened when the world lost 17 year old Jonathan Pitre, on April 6th.

Jonathan Pitre was known as “Butterfly Child” because of the rare disease he had called Epidermolysis bullosa, which makes the skin as fragile as a butterfly’s wings. The disease also known as EB, is often referred to as one of the worst diseases known to modern medicine . The reason is that the slightest scratch or blister results in wounds similar to third degree burns and children living with EB are in constant pain because the skin never heals properly.


PHOTOGRAPH BY George Harrold / Barcroft Media

However, that pain became a source of strength for Jonathan whose mission was to raise awareness and  funds for the disease. Jonathan became an ambassador for Debra, the nonprofit organization dedicated to helping support families with EB.

The world first met Jonathan a few years ago, when James Duthie, did a documentary film called The Butterfly Child which told the story of this amazing young man and the life he and his mother experienced living with this disease.

James Duthie, said about Jonathan, “What really made him proud was to be able to draw attention to the disease, to raise money for it, to educate people on a disease that nobody really knew anything about except the families that were living with it. I’m thrilled he got to do that in his last few months because it really gave him purpose. I think that brought him a lot of peace in his last months.”

Jonathan’s positive nature, determination and sense of purpose made him an inspiration to all. The world will be better because he was here and not quite as bright without him. His mother said in a statement on Facebook, “Jonny’s story has been made very public over the last years as he invited you into his life and daily struggles with EB, as he tirelessly fought to raise awareness for this horrific disease. I am proud to say you did Jonny boy!”

charity matters.

 

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Copyright © 2018 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

A camp with heart

While I know it is February and summer and camp seem to feel like a million years from now, I had an incredible conversation last week with an amazing human named Lisa Knight, who runs a camp (Camp del Corozon) for children who are living with heart disease. Since February is National Heart month this seemed like the perfect time to discuss our mutual challenges of running nonprofit camps but more specifically Lisa’s incredible work as a registered nurse and nonprofit founder, serving children with heart disease. I hope you enjoy our conversation half as much as I did.

Charity Matters: What was the moment you knew you needed to start Camp Del Corozon?

Lisa Knight: In 1995, I was working with Dr. Kevin Shannon with pediatric heart patients and we had a mother who came in to see us. Her son had multiple heart surgeries and was depressed. He didn’t want to go to sleepover or PE class because he was embarrassed about all of his scars and he didn’t feel like a “normal kid.” I suggested to Dr. Shannon that maybe we should try to send him to camp and began to look for a camp that could manage his health challenges or that would take him. There was only one, it was very far away and very expensive. So I suggested that we try to create our own.

Dr. Shannon loved the idea. I reached out to my friends in Catalina that had a camp and asked if we could come for a week with some heart patients, they agreed. We asked all our doctor and nurse friends to volunteer and within two months we had 49 heart patients and 100 volunteers coming to camp for free.

Charity Matters: What challenges did you have?

Lisa Knight: We had NO money, We maxed out credit cards, were not totally sure what we were doing but we were sure we should be doing this. Then we had a surgeon named Jerry Bucklin, who gave us $5000 to make it happen and we did.

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

Lisa Knight: I get so filled up by it all.  These kids have survived death, there are not camps for these types of kids due to their medical conditions. It transforms them. You see them show each other their scars. The most rewarding thing is when you hear children call you by your camp name, when you see them years later not at camp.  This year our first camper is coming back as a counselor, so to see not only these children grow up and give back but to watch my own 29-year-old daughter getting even more involved as she takes on more responsibility with her role at Camp del Corozon, is so rewarding. 

Charity Matters: Tell us about your successes at Camp del Corozon?

Lisa Knight: I think our successes is that thousands of children have been able to come to camp, to make friends, become more confident and just feel like regular kids.I think back to when we began and am so proud that it is continuing and going on. I get joy out of all our success, each child, each camp. This summer we will have close to 400 campers who will come to camp for free. Twenty-three years later that feels pretty amazing.

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

Lisa Knight: I’ve learned so much, how to dream dreams, connect the dots and make things happen. I have learned gratitude after having so many struggles and I have learned that there is nothing better in life than service, you simply cannot be happy without it.

Charity Matters: How has this changed you?

Lisa Knight: I feel that Camp del Corozon was just supposed to be. This is my whole life. I feel that I am on a chess board and God just pushes me in the direction I am supposed to go.”

Charity Matters.

 

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February is all about heart….

It is February and National Heart Month, tomorrow is Valentine’s Day and for next 48 hours the world will be full of hearts, candy, paper and real ones. This is the time of year when we think about love and what our hearts do and it is also a time to take a pause and think about what happens when our hearts are broken?

One out of 110 children will be born this year with congenital heart disease, over 40,000 children. What does that look like for those families? Over the years I have met a number of these resilient, brave and courageous parents and each one inspires me with their passion and commitment to their child. Their journeys are extraordinary and as a result so are these miraculous children who come through this, like dear Max Page we discussed  last week.

On Thursday, we will meet Lisa Knight, a pediatric nurse who has been working with thousands of these amazing children. Her story and nonprofit will melt your heart. Until then, feel that beating heart of yours, be grateful for your health, all of the love in your life and be sure to share the love wherever you can. The world will be better today because of you.

Charity Matters.

 

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Max: A Force for Goodness

 

All of you who have been reading Charity Matters for the past few years know that Max Page  and his family have become dear friends to Charity Matters. You may remember Max as Little Darth Vadar of the infamous Super Bowl commercial a few years back or from a number of posts we have done featuring his incredible philanthropic work over the years.

I met Max and the Page family through our mutual work at Childrens Hospital Los Angeles, where Max has spent a lot of time over the years. Max was born with a congenital heart defect and over the course of the last 13 years has had 12 surgeries. This past week Max went through yet another surgery on his heart,his 13th,  to replace a valve that his body has outgrown. Each year over 40,000 are born with congenital heart disease.

His mother Jennifer said, “When Max was an infant, he had an incredible will to live. At age 4, he asked how much surgery would hurt? At 7, he wanted to know why he needed to go through with this and now at 10 he is keenly aware of time and how precious it is.”

Max and his family have used his celebrity and innate goodness as a platform for so many wonderful causes. He is wise beyond his years and he and his brother are two of the most philanthropic young people I have ever had the privilege of knowing, thanks to their inspiring parents.

Max as always uses his experience to make others lives better, even at the tender age of 13. His hope is that if someone is inspired to do something because of his journey, that they would consider supporting a place that has given him so much and become a second home, Children’s Hospital Los Angeles and the Heart Ambassadors program. Max recently said in an interview with Today, “I’m going to do whatever I can to help and do the best to bring awareness to kids like me.”  Max you already have and we are cheering you on during your recovery.

Charity Matters.

 

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Small steps toward making change

This past weekend a friend of ours,  invited us to a workshop he was teaching. The seminar was  focused on wellness, aiming at the overall message that most of us are suffering from some sort of burnout. The purpose was for us to look at our lives in four sections and recognize whether we are not taking care of our physical selves, our mental well-being, our connections with others or in a bigger context addressing our lives purpose.

It was a fantastic way to begin the year (even if we are already a few weeks in) and kick-start those New Year’s resolutions. We discussed such basic things as nutrition, fitness and sleep, all things that most of us can work on improving in one way or another. What was fascinating was the science that showed how significantly our productivity increases once we invest in ourselves in any of these areas.

More than breaking down our health, physical and mental, we talked about unplugging. Something that truly resonated with me. Our teacher offered such simple suggestions as creating a nighttime ritual or schedule of unplugging. Creating a device free zone or space, leaving the iPad anywhere but next to the bed at night…something I really need to work on.

Other areas we discussed were our connections with others in this world, how we can improve those and ultimately how all of these things come together toward finding our purpose. I came away inspired and committed to continuing my New Years resolution of daily meditation and a renewed commitment to unplugging. It was a fantastic way to pull back and look at our lives in these four areas, decide what area to focus on and more than that, ways to take the first small step towards creating change.

As Lao Tzu said, “The journey of a thousand miles begins with a single step.” Here is to taking small steps towards big changes.

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.  Last week, I had the most fun and fantastic conversation with Jo Ann Thrailkill, the founder of Pablove.org, a nonprofit whose mission is 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 is our conversation:

Charity Matters: What was your background before starting Pablove.org?

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

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

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

Charity Matters: Where did you start?

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

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

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

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

Charity Matters: Tell us the success you have had?

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

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

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

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

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

charity Matters

 

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Hand to hold

A hero is someone who has given his or her life to something bigger than oneself.”

Joseph Campbell

I like to say that I have a front row seat to humanity. I am privileged to meet and share the stories of the most remarkable people and this week’s conversation with Kelli Kelly was so inspiring that I can’t wait to share. Kelli is a real life hero, a woman who went through enormous pain and suffering when her son Jackson was born 16 weeks premature in 2000, weighing a little over a pound. What she did with that experience is a lesson for us all.

Kelli said, “There are defining moments in our lives. Some bring great joy-others sorrow and pain. If we embrace these moments, they can mold us into new and improved versions of ourselves-one that allows us to ignite change, instill hope and find a purpose for our lives we never thought possible.”

In 2000, after the weeks in the NICU (Neo-Natal ICU) Kelli was sad, stressed, traumatized, depressed and emotionally drained not knowing the fate of her newborn son. She said, “The guilt, grief, anguish and pain was overwhelming. Now 17 years later, I can still relate to that defining moment.”  Here are the highlights from our inspiring conversation:

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

Kelli Kelly: “When I realized that 1 out of 8 babies born in the United States is pre-term. We started as a March of Dimes Ambassador family but I realized early on that there were  many organizations to support premature babies but nothing to support the families. I was looking for an organization to help me meet other families going through this same stress, isolation and anxiety and there wasn’t one to help us.

So, at first I gathered some families together at our local hospital and created a program, connecting NICU families but it wasn’t enough. In 2008, we began Hand to Hold to provide families a  peer-to-peer support network for seasoned families of premature babies. We knew we needed to give families ways to survive and navigate their time at the NICU and beyond.”

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

Kelli Kelly: First and foremost it is remembering what it felt like to be a parent of a child in the NICU and the impact, trauma, ptsd and stress that causes in all areas of your life. Secondly, it is the cards, the emails from the people we touch. We just started a podcast and are now hearing from families all over the world who are grateful we are sharing with them. Most of all, it is a strong faith in those difficult moments that keeps me moving forward.”

Charity Matters: When do you know that your work has made a difference?

I know we are making a difference when organizations like the Preemie Parent Alliance, realize that parents voices need to be a part of this conversation. When we were the keynote speaker at the National Neonatal Nurses Convention or when I’m speaking to national pharmaceutical companies and their employees about what is happening in this space.

We are truly trying to make foundational changes to help families to be better parents and to not only survive but thrive after this experience.

Charity Matters: Tell us a little about your impact and where you are headed next with Hand to Hold?

Kelli Kelly: We know that our impact and reach continues to expand through our national database that connects these families, through our expanding list of health care partners and because we continue to help break down the barriers to reach families going through this experience.

We started a podcast last February and have had over 13,000 downloads in 42 countries. So we know there is a need and that we continue to reach these families. That was the goal to find, connect and support as many families as we can. Our next steps are to begin our work with “Beyond the NICU” with a book and an App to help families navigate the invisible diagnosis that is a factor with preemies. We will be developing a care map to help navigate families through the process of  first all the way through their child’s education.

To end where we began with Kelli’s inspiring words, “There are defining moments in our lives. Some bring great joy-others sorrow and pain. If we embrace these moments, they can mold us into new and improved versions of ourselves-one that allows us to ignite change, instill hope and find a purpose for our lives we never thought possible.”

Kelli is an inspiration to all with her purpose driven life in service of others.

Charity Matters.

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The heart of football

Last friday was the first day of fall, and with the new season comes a host of familiar traditions. Football, of course, being at the top of the list for most. This year there is a new football tradition that is more than worth highlighting and one that began from one Iowa fan’s idea to help lift the spirits of all of  young patients at Iowa’s Stead Family Children’s Hospital.

What makes this children’s’ hospital so unique is that it is attached to the University of Iowa’s football stadium. Hawkeye fan, Krista Young, who works with young children for a living, had an idea to lift the spirits of these patients. She posted a comment on the Hawkeye Heaven Fans Facebook page that said, “I think with the new University of Iowa hospital addition open, Kinnick should hold a wave to the kids minute during every game. Can you imagine how neat it would be to have all those fans, players and coaching staff looking up at you sending a little extra inspiration?”

Krista’s idea was shared and shared and momentum began to build. Take a peak at what happens when 65,000 people come together to show their love.

We all make a choice each day with what to focus our energy and attention on. Krista Young’s loving heart and selfless idea, not only warmed patients and families hearts, but reminded each of us what is truly important.

The power of what happens, when we come together and show love for others in solidarity, with something as simple as a wave is truly healing.

Charity Matters.

 

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