Why I joined FRAXA Research Foundation

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In 2017, I joined FRAXA Research Foundation, a national nonprofit in Newburyport, MA as Director of Development and Community Relations. FRAXA’s mission is to find effective treatments and a cure for fragile X, the most common inherited cause of autism and intellectual disabilities. I had spent the previous 17 years in cancer education and research, most recently as Vice President of Development at the National Foundation for Cancer Research (NFCR) in Bethesda, MD.

While fragile X research was a departure from cancer, I was drawn to FRAXA firstly because of the mission focus on research. The model of funding individual research labs across many different institutions was similar to how NFCR approached researcher: accept proposals from several labs, vet them through a rigorous scientific review process, and select the most promising projects. FRAXA has been putting over $1 million into fragile X research since its inception in 1994, over $26 million to date. Another reason I joined FRAXA was the people, particularly the founders Katie Clapp and Dr. Mike Tranfaglia. They are parents of a son with fragile X, and have shown a relentless commitment to funding biomedical research for more than 23 years. Once I met a few board members, I was sold. Each of the members of the board of directors is a parent and they all tirelessly give their time. All of them commit to raising money for FRAXA – a lot of money. This impressed me so much, because I had not seen that level of fundraising commitment at previous organizations. 

I have also come to understand that while fragile X is a rare neurological disease, some of the research is similar to work in cancer, such as CRISPR and epigenetics. In fact, some of the researchers I knew in cancer research are colleagues of fragile X researchers. That was cool to find out and made me realize what a small world it is. The level of commitment is the common thread too – all of the researchers I have met along my journey are truly passionate about their work. I really love my new job because I can continue to be the #CancerResearchEvangelist and can continue to support medical research in my day job too. In addition, I don’t have to commute to Washington, D.C. from my home near Boston.

#gratitude

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