When Ellen Skala, also referred to as Elle, contacted us in August 2018 about creating a personal fundraising campaign for FRAXA, we were excited about her interest in supporting our mission. What we didn’t know at the time was just how remarkable this young woman is. From the start, 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 all of this, she committed to shaving her head if she met her fundraising goal.
Ryan Pitcher, grand prize winner of FRAXA’s photo contest back in 2009, 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.”
Elle then set out 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 is 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 in raising $10,611 for Fragile X research and, true to her word, 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 is an inspiration to all of us. She proves that one person can make a difference. Thank you so much Elle. You are a true FRAXA Ambassador. Learn more about becoming a FRAXA Ambassador, or contact Dave Bjork via email at firstname.lastname@example.org or call (978) 462-1886 to run your own personal campaign for Fragile X research.
Dave Bjork, of Georgetown, MA, has more than 17 years of progressive experience in nonprofit marketing and fundraising leadership roles including Vice President of Development, National Foundation for Cancer Research, Bethesda, MD. In this role, he launched several fundraising programs and became known as the “Cancer Research Evangelist” because of his dedication and commitment to basic scientific research. Bjork has made it his life mission to connect individuals, businesses, academic institutions and other key influencers to forge strong partnerships to focus on researchers being funded so they can deliver life changing advances. “Funding research directly and fully is the most powerful way to cure disease,” said Bjork.
Bjork earned a BS in Economics and Finance from the Wharton School at the University of Pennsylvania.