I was in Washington, D.C. recently on Capitol Hill meeting with my representatives in Congress to advocate for federal funding for biomedical research. As I’ve written many times, I believe government agencies like National Institutes of Health (NIH), National Cancer Institute (NCI) and Department of Defense (DoD) play a critical role in advancing science and making discoveries that impact millions of lives. As a lung cancer survivor, I’ve advocated for cancer research for many years. This time I was on the hill on behalf of the organization I work for, FRAXA Research Foundation, advocating for Fragile X research on Advocacy Day, an event organized by the National Fragile X Foundation. And I met an advocate that inspired me and reinforced my long-held belief that one person can make a difference. Meet Ellen Skala.
Ellen Skala, also referred to as Elle, was on Capitol Hill to advocate that day too. I had spoken with her several times, but I had never met her in person. She contacted FRAXA in August 2018 about creating a personal fundraising campaign for research, so I was excited about her interest in supporting our mission. What I didn’t know at the time was just how remarkable this young woman is. Elle had set a goal to raise $10,000 for Fragile X research by her birthday. Her plan was to reach out to her family and friends, share the story about her friendship with Ryan Pitcher, and advocate for Fragile X families and individuals. On top of that, she committed to shaving her head if she met her fundraising goal.
Ryan Pitcher has Fragile X syndrome. Elle met Ryan over a year ago, and as she describes it, “he has changed my life in the most beautiful of ways.” What stood out most to her was his huge heart. She was amazed by how deeply he cares about his inner circle of family and friends, always wanting to make sure they are happy and taken care of. Elle wanted people to know about him. In her words, “we all could use a little bit more of that care and compassion in our lives, so out of my passion for the Fragile X Community, I am creating this fundraiser.” After meeting Elle, what stood out most to me was her huge heart. She volunteers her time, raising awareness and advocating for government funding, and led her own personal fundraising campaign. So, just as she said she wanted people to know about Ryan, I wanted people to know about her.
She set out last fall to share Ryan’s story and ask for donations to FRAXA in support of our mission. Those who know her understood just how important Ryan and his family are to her, and gladly supported her fundraiser. She explained why Fragile X research was so important to her personally and the difference their gifts would make. Elle also reached out to Fragile X families in the DC area, where she has recently relocated, to hear their stories and connection to Fragile X. She quickly became a Fragile X advocate in the area and shared FRAXA’s mission with everyone she met. Elle grew up in the Midwest, and after graduating from the University of Missouri – Columbia, moved to Washington, DC in the summer of 2018 to start a full-time job. Everyone who has met Elle has come to learn what her friends and family already knew. She is passionate, relentless, and has a burning desire to create a positive impact on the lives of others.
On February 9, 2019, Elle celebrated her 23rd birthday in New York with Ryan and his family. She surpassed her goal, raising $10,611 for Fragile X research. Wow! And true to her word she shaved her head completely bald. Elle shared with us that her hair has always been a huge part of her identity. As she explains, “It has helped distinguish me from other people. Seriously, my grandmother could find me in a crowd because of my hair. Just like my hair is a part of my identity, Fragile X is a part of Ryan’s.” Elle’s commitment to the Fragile X community and to research is truly inspiring. I’m sure her members of Congress were equally as inspired by meeting her. She proves that one person can make a difference. To me she is a super advocate.
#gratitude #advocate #research #compassion