July 22 is National Fragile X Awareness Day, but I’ll bet few know the history behind it.

In 2000, before there was such a thing as a Fragile X Advocacy Day, FRAXA Research Foundation and David Busby (husband to Mary Beth, father to two adult sons living with fragile X, a member of FRAXA’s pioneering leadership team, and a prominent and politically well-connected DC lawyer) were running fragile X advocacy in Washington, DC.

Today’s Senate Champions are Sen. Stabenow and Isakson. But in the late 90’s it was David and FRAXA who were running things and David secured commitments from the first Senate Champions, John Edwards and Chuck Hagel. And, it was David and a small group of FRAXA advocates who went to DC and convinced those initial champions to introduce “The Fragile X Research Act” in 1998.

The bill never passed as Congress was unwilling to pass a research bill for a single condition. But David and his group went back to the drawing board, helped form and teamed up with a new coalition known as the “Coalition for Children’s Health” and went to work on a new bill which came to be known as the “Children’s Health Act of 2000”.

The Children’s Health Act of 2000

The Children’s Heath Act of 2000 was essentially the same as the “Fragile X Research Act” but it brought together other loosely knit groups that were also knocking on the door to get their own “Research Acts” passed (Autism, Juvenile Arthritis, Juvenile Diabetes and Childhood Asthma). Since Congress said no to a research bill for only one condition, the “Children’s Health Coalition” was formed to accomplish the same thing, but as a group, which would propose a bill covering multiple conditions.

David reached out to me and invited me to join the Coalition. I made my first-ever trip to Washington, DC to meet with David and the Coalition and I was hooked. David took me under his wing, introduced me around and taught me the ropes. I think David was semi-retired even then and he was excited at the prospect of having someone to take over the reins of fragile X research advocacy. For me, it was like entering a Masters level program with David as my professor.

Regular trips to DC followed and the Children’s Health Act of 2000 passed. The “Red Line” copy with the “wet” signatures of Denny Hastert, Strom Thurmond, and Bill Clinton is below. This framed copy was a gift from Professor Busby with David’s personal letter of thanks. They hang in my office with my other diplomas.

The First National Fragile X Awareness Day

David also introduced me to my next professor. A prominent DC consulting firm, then known as Baker Daniels, had allowed one of it’s bright, young, just off the Hill consultants, to work pro-bono as the Chair of the Coalition for Children’s Health. That fire-brand provided hundreds of hours of tier-one consulting, organization, motivation and expertise which were instrumental in passing the CHA of 2000.

Many of you probably know her. Her name is Serena Lowe. Working closely with David and Serena opened my eyes to a world of possibilities for FX and laid the foundation for the fragile  X community’s effective advocacy efforts ever since.

As for National Fragile X Awareness Day, David Busby’s work resulted in much goodwill with many powerful members of Congress. FRAXA was then, and remains now, focused on research aimed at finding effective treatments and ultimately a cure for fragile X. But they knew the importance of awareness too, and so David asked for a favor, and a Congressional designation of a National Fragile Awareness Day followed. The proclamation was presented to the National Fragile X Foundation as a surprise gift! I’ll bet you didn’t know that, so, thanks David and thanks FRAXA.

I’ll bet you also didn’t know that my friend, mentor, and FRAXA pioneer, passed away at the end of last year at the ripe old age of 90. I only found out recently myself and feel fortunate to be able to re-tell this story as a way of paying tribute to my friend on Fragile X Awareness Day.

Thank you, David, for your friendship, for imparting your knowledge, and for partnering with Katie and Mike on their journey. I’m sorry you didn’t live to see the cure but because of the mountains of good you did for fragile X we’ll get there, no doubt. Your legacy lives on, my friend.

Children's Health Act of 2000
Children's Health Act of 2000

Jeffrey Cohen is the father of 28-year-old fraternal twins who are living and thriving with fragile X syndrome. He has lectured extensively about fragile X and has been a regular presenter at FX conferences. For nearly 25 years he served in a variety of volunteer and staff positions with the NFXF including board president, director of government affairs and interim executive director. In 2002 he received the Foundation’s Spirit of Excellence Award, in 2003, the Maxwell J. Schleifer Distinguished Service Award from Exceptional Parent Magazine and in 2010, the Foundation’s Lifetime Achievement Award. He received his Bachelor’s Degree in Business Administration in 1980 and his Juris Doctorate in Law in 1983, from Wayne State University in Detroit, MI. He currently lives with wife Arlene and adult children Josh and Alli in Carefree, Arizona and has returned to the full-time practice of law.