Who: Co-founder and executive director of the Fragile X research foundation FRAXA.

House: North

Hometown: Cambridge, MA

Current Residence: West Newbury, MA.

Spotlight: Katie Clapp immediately sensed that all was not well with her baby son, who had difficulty feeding and hesitated crawling until he was twenty-one months old. Yet it took three and a half years for Andy to receive a diagnosis of Fragile X, the most common genetic cause of mental impairment—and the toughest to identify. In the fourteen years since Andy’s diagnosis, awareness of and research into Fragile X has grown terrifically, due in no small part to FRAXA, the non-profit foundation the enterprising Clapp established in 1994, along with her husband, fellow alum Michael Tranfaglia (A.B. ’82), and Kathy May, another parent of a child with Fragile X. To date, FRAXA has provided over ten million dollars’ worth of funding for research into the origins of and potential treatments for Fragile X.

Influence: Just how much has FRAXA’s impact turned things around for those affected by Fragile X? In 2004, their funding got the ball rolling on a particularly promising bout of research, which has the potential to generate drug therapies that could drastically lessen some of Fragile X’s symptoms, perhaps even eradicating some altogether. Without FRAXA’s backing, says one scientist, this research might not have begun for another twenty-five years.

Friends: Never underestimate the strength of Crimson ties. When the auspicious theory for designing these drugs landed in FRAXA’s lap at a conference, Clapp and her husband sped up the idea’s passage into the realm of the verifiable by enlisting the help of Dr. Robert Bauchwitz for testing. After all, before Bauchwitz was a revered Columbia University neuroscientist, he was a denizen of North House, 02138. Further proof that, while not all good things come from the Western side of the Charles River, a surprising amount do: Mark Bear, the principal scientist behind the theory, hails from M.I.T.

Liberal Arts: The multitalented Clapp, who majored in history at Harvard, also has a master’s in computer science and several years of work as a software engineer and a computer science professor under her belt. At first, she juggled her comp sci career along with heading up FRAXA—until three traffic tickets in as many weeks persuaded her that she was a tad too busy.

Back in the day: Fellow alum Claire Calcagno (A.B. ’82) remembers Clapp, the only Boston-area student in her freshman year suite, as the most “down-to-earth and together” one in the group of six. Calcagno recalls Clapp’s “core [of] determination” even then.

High Points: September 22 and 27, 2000 were good days at the office for Clapp and her FRAXA colleagues. The Children’s Health Act of 2000, which upped federal funding for research on pediatric diseases, like, for example, Fragile X, were passed in the Senate and the House. Getting invited to a party at the White House on short notice and hanging with the Clintons in the Blue Room was an unexpected plus.

High Praise: You know you’re doing something right when the guy who discovered the structure of DNA is behind you. James D. Watson, Nobel Prize winner, has this to say of Clapp’s work: “FRAXA…has been hugely effective in raising money and in inducing Congress to support Fragile X research.... experience shows that dedicated, resourceful, and, above all, motivated organizations like FRAXA sometimes do hold the key to cracking these diseases."

In their own words: To watch video clips of Katie Clapp and Michael Tranfaglia discussing life as parents of a child with Fragile X, click here.

*X Marks The Spot (PDF) [ARCLIGHT (via FRAXA)]
*Fragile Promise: Parents Push Scientists to Cure Son’s Disease [Boston Globe]
*Waisman Center [U.Wi.-Madison]
*Congress Acts [Fragile X Association of Southern California]