“There is not one big cosmic meaning for all; There is only the meaning we each give to our life, an individual meaning, an individual plot, like an individual novel, a book for each person.”
Last week we lost a dear friend to cancer, someone we had known since college who was not even 50. Sadly this was not unexpected but losing a friend so young and so full of joy was and still is beyond difficult. It is moments like these that make us all stop in our tracks and hit the reset button to think about what is truly important? I found myself asking how am I using my precious time and what really matters?
I came home from the service a bit numb, sad and depressed. I decided to read to try to take my mind off the days events. I began to read an article about Paul Allen, Microsoft’s co-founder who had also just passed away. The article in the Chronicle of Philanthropy talked about Paul Allen’s passion for life. It discussed his love of learning, of music, sports, exploring ideas and the world’s unknown. Paul Allen donated over 2.3 billion dollars in his lifetime and in addition to that he also took the Giving Pledge, vowing to donate more than half of his estate to charity.
When he took the giving pledge he had to write an essay and in it, he said, “My philanthropic strategy is informed by my enduring belief in the power of new ideas. By dedicating resources that can help some of the world’s most creative thinkers accelerate discovery, I hope to serve as a catalyst for progress in large part, by encouraging closer collaboration and challenging conventional thinking. When smart people work together with vision and determination, there is little we can’t accomplish.”
Each life, whether our friends, Paul Allen’s or our own is ultimately only as good as the meaning we give it. We are the author, we have the pen and now to script that meaning, our individual plot, our novel, and our book. The meaning is for each of us to find and to live.
YOUR REFERRAL IS OUR GREATEST COMPLIMENT, IF YOU ARE INSPIRED, PLEASE SHARE AND INSPIRE ANOTHER.
” When you come to the edge of a forest and there is no path-make one that others will follow.”
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.
YOUR REFERRAL IS OUR GREATEST COMPLIMENT, IF YOU ARE INSPIRED, please SHARE AND INSPIRE ANOTHER.
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.
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 was 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.
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 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 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 and 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. We are one of the few engines that 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 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.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
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.
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.
Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.
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 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.
Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.
On a rain soaked day, a couple of weeks ago I met the most remarkable woman for lunch, her name is Katie Quintas. Katie is a living example of C.S. Lewis quote, “Hardships often prepare ordinary people for an extraordinary destiny.” Katie’s hardship re-routed her destiny.
Katie’s life was fantastic. She had a husband, Silvio, she adored. A wonderful son, Bryan and a fantastic career consulting non-profits. Then all of that changed in 2006, when her husband Silvio was diagnosed with leukemia and six months later, her only child Bryan, was diagnosed with Stage Four Non-Hodgkins Lymphoma at age 16.
Katie’s employer was supportive as she tried to manage a full-time job and the two most important people in her life’s cancers. What Katie didn’t realize was how was she going to manage to cook, clean, do laundry, grocery shop, update everyone on Bryan and Silvio’s conditions, deal with the offers for help, all while working and driving between two hospitals over an hour apart from each other? She was overwhelmed, wondered how families manage and didn’t even know where to look for help.
It turns out that she was not alone.
As 2007 came to an end, and both Katie’s husband and son were finishing up their cancer treatments, she began looking for organizations that help families through daily life during an illness, especially the illness of a child. In 2009, when she still hadn’t found an organization that fit the need, she began discussing the idea of creating one with her husband Silvio. With her husband’s encouragement, she did just that launching Here to Serve.org in 2011.
The Quintas family had been through so much but realized that there were so many people who had less. With Silvio’s support Katie set up her non-profit to connect and create online care communities that come in at the beginning of the health crisis to organize, friends, resources, medical information, funding, support all without overwhelming the caregiver, who is typically the parent.
As I sat at lunch and listened to Katie’s story, it was almost too much to process what she had been through but even more to grasp what she does for others. When we both went onto her web-site together and I saw what a care community looked like for a family, it was unbelievable. Once I was part of a sick patients community, I could sign up for everything from walking the dog, bringing a meal, doing laundry, running an errand, donating groceries and the list goes on. The services Here to Serve provides is everything that Katie needed when she went through this and didn’t have.
Sadly, Katie lost her beloved husband to cancer, but she said his memory still keeps her going. Katie told me, “I can’t imagine not doing this. Here to Serve gets me up in the morning, it motivates me and I was created to do this work. This is my purpose.”
On Sunday night I curled up on the sofa for one of my favorite TV nights of the year, to watch The Golden Globes. Unlike the Academy Awards, this show feels like you are at a party you were invited to. So when I saw this story on last night’s news, about the Golden Globes and an amazing non-profit’s photography program, I had to share…. especially since this week was already devoted to photography and how it makes our world better.
In 2008, when Jo Ann Thrailkill and Jeff Castelaz’s son, Pablo, was diagnosed with a rare childhood cancer they wanted three things; to fund research for a cure, to help educate families dealing with cancer and to improve the lives of children living with cancer through the arts. Pablo lost his battle at only six years old but his family was determined to help others and in 2009 began the Pablove Foundation to continue their mission.
So what does this have to do with the Golden Globes you ask? Well, one of their programs is called Pablove’s Shutterbugs and the goal is to give pediatric cancer patients a new perspective through the lens of the camera, in order to learn to express themselves and find a new way of seeing things. Well one of these little shutterbugs was the cutest paparazzi on Sunday’s Red Carpet, take a peek…
Pablo’s legacy lives on in the over 1,000 students who have been reached through Pablo’s Shutterbug program since 2011. The foundation has funded over 19 research institutes worldwide with over 1.9 million dollars given to find a cure. Now that is a picture worth smiling for.
No matter how many post I write, the miracle of the human spirit always continues to inspire me and leave me in awe. The one I am about to share, is no exception. It is the story of an Orange County, CA teenager named Tim Vorenkamp who was diagnosed with a rare type of cancer called Synovial Sarcoma. A cancer so rare that is only strikes 1 to 3 out of every million. The boy as rare as his cancer, determined to make a difference with the hand he was dealt……which is exactly what he did.
Sadly, Tim lost his battle on January 10th, 2016 but his legacy lives on in the foundation he and his family began. As he said in the video, ” Battling cancer you never lose, and you will never lose. Even if one day the fight ends! Once something like this happens, you never lose, you just start a new journey.”
A few years ago, I was worked to put on a Women’s Entrepreneurial Conference, that highlighted amazing women who had started incredible companies. One of our guest speakers was a woman named Lee Rhodes, the founder of Glassbaby.
Her story and business, a true social entrepreneur, where beyond inspiring. I never forgot but just recently received a Glassbaby candle as a gift and thought her story was worth sharing with you. When Lee was diagnosed with lung cancer she had an epiphany. She began to, “see the inequities of cancer, people who could not afford their chemo, the bus to get to chemo, or a lunch to sustain them through their treatment.”
So in 1995, when she was going through her third battle with cancer, as a mother of three…her husband came home from a glass blowing class with a little jar. Lee dropped a votive in his homemade creation and knew it was something special. In 1997, she began making these beautiful votives and giving them as gifts to dear friends and by 2001 Lee was selling Glassbabies out of her garage with the goal of donating as much as she could to support those with cancer.
Today, Glassbaby has donated over 3 million dollars to charities and has started their own 501c3, non-profit called the Glassbaby White Light Fund. The goal is to continue their mission of lighting the way for those in need.
When actor Gene Wilder passed away a few weeks back, I was reminded of his beautiful love affair with Gilda Radner and their subsequent involvement in cancer support. Wilder’s death coincided with a lunch catch up with a friend, who works for the organization that helped Gilda Radner through her battle with ovarian cancer, Cancer Support Community.
As I caught up with my friend, Meg Symes of Cancer Support Community, she told me her own story of watching her mother go through cancer in the 70s without the support, community or a place to go where it was “socially acceptable to have cancer.” When cancer struck Meg decades later, she was blessed to have the resources her mother did not. When the opportunity presented itself to be a part of supporting those with cancer Meg was all in.
Meg explained that Cancer Support Community was founded in 1982 by Dr. Harold Benjamin to provide free support, cancer education and hope. “So no one needs to face cancer alone,” patients and their families learn skills to enable them to regain control and restore hope. Patients and families can attend workshops, classes, yoga and come to a safe warm welcoming place that feels like home and gives the support needed to take on cancer.
In the Pasadena chapter alone, Cancer Support Community serves over 1,100 people a year, all free of charge. Today, Dr. Benjamin’s concept of providing support, education and hope for people with cancer has expanded to over 100 locations worldwide. Regardless if you were Gilda Radner, who attended the Santa Monica location or in Tokyo or someone here in Pasadena, because of people like Meg and thousands of donors and volunteers…..no one has to face cancer alone.
I don’t know about you, but I have always adored Katie Couric. I follow her on Instagram and for the past two weeks every day she has posted a picture and told the story of someone’s life affected by cancer. Each story more devastating than the next, with faces of children, mother’s, grandparents….each one of us knows someone who has been affected by this horrible disease.
Katie has been involved with an organization called Stand Up 2 Cancer. It began as an idea in 2008, to bring the entertainment industry together to raise funds for cancer research. Tonight, once again they will do just that.
Since 2008, Stand Up 2 Cancer has raised millions of dollars that have funded over one thousand cancer researchers and 19 cancer dream teams put together to end this disease. So, tonight turn on your tele to be entertained, inspired and to join in this fight that Stands Up 2 Cancer.
Have you ever read a book that haunted you? Spoke to you and really made you stop and think? I just finished one and I have to say, it felt as if the universe had given me a gift. When Breath Becomes Air by Paul Kalanithi, a truly beautiful autobiography of a Stanford trained neurosurgeon who discovers he is dying of cancer.
An extraordinary view of life, from someone who spent his trying to save others. A man who loved literature and found himself pondering the question of what makes a human life meaningful? He writes early on the book, “If the unexamined life was not worth living, was the unlived life worth examining?”
Paul Kalanithi wrote of his experience of both living and dying, and how his perception of both changed through his journey with cancer. One of my favorite quotes from the book was, ““There is a moment, a cusp, when the sum of gathered experience is worn down by the details of living. We are never so wise as when we live in this moment.”
Such wise a beautiful words from a life well lived, and a legacy for all to learn from.
This week is the beginning of Movember. No, this isn’t a typo but rather a movement. I was reminded last week, when my second son asked me to sponsor his fraternity’s fundraiser in support of the cause. You may recall that last November there seemed to be an unusual amount of facial hair and beards. Those beards and unshaven faces were not by accident, but rather a statement for men’s health.
A statement that all began in 2003, when two mates in a bar ( Travis Garone and Luke Slattery) were having a simple conversation about whatever happened to the moustache or the Mo, as they called it, and a joke about bringing it back. These buddies from Melbourne, Australia decided to talk their friends into growing a Mo for a purpose. They were inspired by a friend’s mom who was raising funds for breast cancer and decided to direct their efforts towards men’s health and prostate cancer. They sent an email titled Are you man enough to be my man? The result was 30 guys willing to take up the challenge and pay ten dollars each, towards their cause and the beginning of Movember.
Their goal started small but never wavered. These four friends wanted to recruit men who would support Movember, who by the way are called MoBros. The Mo Bros, would begin by registering at Movember.Com and start Movember 1st clean-shaven, then grow and groom their Mo, for the rest of the month, raising money along the way. In addition, these men become walking, talking billboards for their cause. Not to exclude the girls, they also started Mo Sistas, who champion their Mo by registering and supporting the Mo Bros in their life.
What started as a fun bar conversation in 2003 and 30 MoBros in Melbourne, Australia has morphed into over 4 million participants globally, who have raised more than $649 million to date. Movember, is more than a month, but rather through the power of the moustache, it has truly become a global movement that is changing the face of men’s health.
As you know I have been thinking a lot about dreaming big and continuing on my quest living a life full of purpose. When I think about the combination of these two together, my mind immediately goes to thoughts of my amazing friend, Ann Louden. Ann is a breast cancer survivor who took her diagnosis and turned it into a purpose fueled mission. The result is her non-profit TCU Frogs for the Cure.
Ann has worked at TCU for over twenty years and over a decade ago when she heard the words, “You have cancer” she knew she needed to do something. As the ultimate connector, she engaged her Fort Worth and TCU community in finding a cure, supporting those with breast cancer and partnering to support the cross town organization Susan G. Komen Foundation.
Her organization was the first to engage college football with breast cancer and now today you can’t tun on a game in October (pro or college) without seeing pink, it all started with Ann. However that dream wasn’t big enough, she went further in creating inspiring music videos with thousands of survivors to bring everyone together in support for this cause. When the videos are downloaded from itunes, the proceeds go to fight breast cancer.
This years video will debut at the Thursday, Oct 29th at the TCU football game vs West Virginia and is aptly done to the song,”Ain’t No Mountain HighEnough.“I cannot think of a better song to describe Ann Louden and all breast cancer survivors journey to overcome and fight this disease.