At the recent 2007 FightSMA National Spinal Muscular Atrophy Conference, Congressman Patrick Kennedy of Rhode Island addressed the attendees about spinal muscular atrophy research funding and the SMA Treatment Acceleration Act. The proposed legislation, developed through a collaborative effort between FightSMA, the SMA Foundation, and Families of SMA, would establish a national clinical trials network to develop treatments that are safe and effective for SMA patients.
Conference attendee Karin Vallo captured the speech on video. Karin is a leader in the Desiree’s Buddies/FightSMA Southwest Chapter in Albuquerque, New Mexico, and is the grandmother of Desiree. A big “thank you” goes out to Karin for helping us make this video available!



A “fighter mom” is a mother with a purpose. She is organized to fight a disease or disorder that’s affecting her child, by raising money for research, raising awareness, and making sure everyone knows there’s a horrible disease that needs our attention. She is a
In Episode 4 of the Fighting Back Podcast, produced by Fight SMA and FighterMom, we continue our discussion with Fight SMA President Martha Slay. In Episode 3 we discussed the Fight SMA National Spinal Muscular Atrophy Conference in Washington D.C., as well as what it takes to be a FighterMom. In the latest episode, she talks about the exciting relaunch of the FighterMom program. The program, developed by Fight SMA, is designed to support, educate, and inform anyone who has become a
