Co-Founder Kathy May Returns after Two Decades to Write Grants
Meet Kathy May.
She, along with Katie Clapp and Mike Tranfaglia, co-founded FRAXA Research Foundation in 1994. This was after the Fragile X diagnosis of her son, Sam, at 20 months old in 1991.
“We got the news the very same day The Washington Post ran a front page article reporting scientists had discovered the FMR1 gene, the cause of Fragile X syndrome and all of Sam’s delays and differences,” she said. “His diagnosis was devastating and, until I met Mike and Katie, I agonized how to move forward. My involvement in the creation of FRAXA Research Foundation saved me. And I hoped it would save Sam, too.”
‘Shadow on My Hopes’
Over the next two decades, Kathy May balanced her career with supporting aging parents and the never-ending tasks of finding the best schools, programs, treatments and activities to help Sam. “It was all-consuming and exhausting,” she said. “Sam was aging and helping him navigate through every aspect of his life cast a shadow on my hopes.”
Fast forward to today and Kathy May’s perspective has evolved.
“My circle has grown and my viewpoint has changed over the years. I am counting on new forms of treatments to enhance the mental, emotional and social growth for Sam and of all those affected by Fragile X. And I am sure there will be a cure someday,” she said. “FRAXA is the reason families can hold onto this hope. I have come full circle to FRAXA and feeling more energized about our work than ever before.”
Feeling Optimistic
Kathy May hopes to build on the great accomplishments of FRAXA and the reasons for optimism going forward are many:
- Each year, FRAXA funds $1 million or more in medical research and clinical trials aimed at finding specific treatments and ultimately a cure for FXS.
- Research funded by FRAXA has filled a pipeline with promising candidates for clinical trials in Fragile X.
- FRAXA is accelerating progress. Its portfolio spans the spectrum of translational, pre-clinical, and clinical research.
‘Lot to Be Hopeful About’
Today, Sam, 28, lives in a group home in Virginia. He still struggles with anxiety, depression, panic disorder and other behavioral challenges. But he has also grown in ways Kathy May could not have imagined two decades ago.
“Sam recently tried paddle-boarding,” she said. “He is part of Special Olympics soccer, basketball and softball teams. And he has a killer tennis backhand that confounds his dad.”
Kathy May expects his future to be surprising, rewarding and better, thanks to FRAXA.
“With continued support, FRAXA will build on momentum,” she said. “There’s a lot to be hopeful about.”
If you know of grants that would be worth applying for, please reach out to Katie Clapp at kclapp@fraxa.org.