Michael Tranfaglia, MD – Medical Director, Treasurer, Co-Founder
Dr. Tranfaglia serves as Medical Director and Chief Scientific Officer of FRAXA. He coordinates the Foundation’s research strategy, working with academic and pharma scientists to develop new treatments for Fragile X and related developmental disorders. Dr. Tranfaglia has a BA from Harvard University and studied medicine at the University of North Carolina. After obtaining his MD, he stayed at UNC for Psychiatry residency training, and then entered private practice in Newburyport, MA. Mike had specialized in the treatment of Anxiety Disorders before his son was diagnosed with Fragile X in 1992 and subsequent founding of FRAXA.
Katie Clapp, MS – President and Co-Founder
In 1994, after her son Andy was diagnosed with Fragile X, Katie, her husband Michael Tranfaglia, and a third parent, Kathy May, founded FRAXA. Katie has a BA in History from Harvard and a Masters degree in Computer Science from UNC Chapel Hill. She worked as a software engineer and instructor in computer science before FRAXA. She has won some prizes for her work with FRAXA, including an American Red Cross Community Hero award and a Women of Justice award from Massachusetts Lawyers Weekly.
Debbie Stevenson – Chairperson
Debbie has worked to raise awareness of Fragile X through print, TV and Internet media, including James Watson’s latest book on DNA. Debbie has organized four events and produced three video pieces for FRAXA. After graduating from Texas A&M University, she worked for ABC News “20/20” as a production secretary, and then went on to producing at CNBC Business News. In 2000, Debbie left to get involved with FRAXA.
Debbie is raising four children with husband Jeffrey, managing partner of private equity firm Veronis Suhler Stevenson. Their oldest child has Fragile X.
Sasa Zorovic, MBA, PhD – Vice President
Dean Clark – West Coast Lead
Dean is an experienced technology professional (25 years) and currently a Director of Systems Engineering for VMware. Dean graduated from the California State University of Chico with a Bachelor of Science Degree in Computer Science.
Dean and his wife Stefanie have three children and they have been involved with FRAXA ever since their only son Lucas was diagnosed with Fragile X in 1999. They and their family hosted a “Fix Fragile X” fundraiser that netted $160,000 for Fragile X research and currently drive an annual mail campaign for FRAXA.
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Over the years, his peers have recognized his work with numerous prestigious awards, including IABC Detroit’s 2012 Communicator of the Year, the chapter’s highest honor, recognizing lifelong professional communications excellence. In addition, he and his wife, Mary Beth Langan, were recognized with the 2012 Halstead-Bresnahan Family Award at the 13th Annual International Fragile X Conference, Miami, Florida, recognizing those who make a profound difference to families affected by fragile X syndrome. Coutilish was named “Distinguished Alumni in 2013” by Grosse Pointe North High School, the school’s highest honor, recognizing professional and community achievements. He lives in the City of Grosse Pointe, Michigan, with his wife, and their son, Andrew, who has Autism and Fragile X Syndrome. He earned a MA in liberal studies with a concentration in communications from University of Detroit Mercy in 1994 and a BA in print journalism in 1987 from Wayne State University. [/expand]
Leslie Martini Eddy – Media Relations
Leslie has been involved with FRAXA since her oldest daughter was diagnosed with Fragile X in 1996. Leslie has held events in the Boston area and works to raise awareness through print and social media. Leslie is a freelance writer with a Master’s in English Literature, and a B.S. in Journalism. Prior to her work with FRAXA, Leslie worked in media sales with Ziff Davis and Disney Publishing.
Haugen of Thompson, ND, has served the youth of North Dakota for the past 11 years at Ruth Meiers Adolescent Center, a residential treatment center that focuses on emotionally disturbed teenagers. She earned a BA in Social Science from Mayville State University in 2005 and is currently pursuing her MBA from the University of Mary. Following the diagnosis of her son, Larry, at 18 months of age, Haugen has made raising awareness of fragile X and funds a priority. She has co founded Larry’s Legends, a NPO that donates all monies raised to FRAXA, along with her ex husband, Jeff Eliason. Together, they raise their daughter, Cindy, 7 and son, Larry, 4, who has FXS.
Email: jhaugen[at sign]nd.gov
Franziska received her B.A. from Barnard College and her J.D. from Boston University School of Law. She left her career as a corporate lawyer to join her family’s international freight forwarding business. She lives in New York City with her husband, Chuck Samuelson, a corporate partner at the law firm of Hughes, Hubbard & Reed, and their various pets. Shortly after being diagnosed as a Fragile X carrier over a decade ago, Franziska and Chuck became FRAXA supporters.
Email: franziskaklebe[at sign]hotmail.com
Pierce most recently held senior finance positions at Liberty Mutual Insurance and Fidelity Investments. She and her husband, Michael, live in Medford, Mass., with their two sons, Graham and Reid, who were diagnosed in 2015 and 2016 with fragile X syndrome. She holds a BS in Business Administration from Villanova University and an MBA and Master of Science in Accounting from Boston College. She is co-founder of The Pierce Family Fragile X Foundation, a nonprofit whose mission is to raise funds to help find a cure for fragile X and raise awareness.
Email: kathan.pierce[at sign]gmail.com
James and his wife, Pamela, became active in raising awareness and funds for FRAXA very early on in their “Fragile X experience.” Their son Patrick was diagnosed in 1993 at 11 months of age. Since becoming aware of FRAXA in 1995, fundraising has been a non-stop effort. First, it was huge yard sales, then banquets and auctions. Since 1997, Patrick’s PALS 3-on-3 Basketball Tournament occurs annually on the first Saturday after Memorial Day. Twenty years later they are proud to have raised over one million dollars. James and Pamela, along with Patrick (23 years old) and Abigail (18), live in Watertown, MA.
Email: Patricks.PALS[at sign]comcast.net
Ronald Watkins, Jr.
Ron is a Certified Public Accountant and is the Program Analyst of Central Hudson Gas & Electric near Poughkeepsie, NY. He lives in LaGrangeville, NY, with his wife Amy and son Niklas. Ron became involved with FRAXA shortly after Niklas was diagnosed with Fragile X in 1999. Niklas was 16 months old at the time of his diagnosis. Ron and his wife Amy have been hosting an annual fundraiser every year since 2003. The Watkins head the Hudson Valley Chapter of FRAXA. Ron and Amy were drawn to FRAXA because of the dedication of FRAXA’s scientific advisors, staff and board.