This winter brought the deaths of two founding members of our National Task Force on Public Awareness. Both made invaluable contributions to the task force and MDA; each had become my dear friend.

Though they were both in their early 50s, Jim Tillman and Barry Goldberg had quite different experiences with neuromuscular disease. Jim was in his 30s when he was found to have spinal muscular atrophy, and his disease progression was relatively slow. He continued a vigorous work schedule as well as active leadership of MDA, as a chapter officer, camp volunteer, a systems operator for our MDA Forum on CompuServe and coordinator of our main Chicago Telethon pledge center.

On Christmas morning, Jim suddenly and unexpectedly experienced a respiratory crisis, an all too typical result of advanced neuromuscular disease. He passed away in the ambulance that was rushing him to the hospital.

Shortly before his death, Jim was interviewed for this issue's article, "Doing It Yourself." His family requested that we include his photo and comments in our story.

Barry had ALS. With his humor and warmth that so many of us came to love, he faced each stage of his disease with curiosity and optimism. He always focused on what he still had, not what he'd lost. Barry brought his upbeat spirit to his appearances on the national Telethon, his participation in his ALS support group and his many online friendships as an MDA Forum systems operator.

He spoke publicly about MDA and the fight against ALS for as long as he could speak. From his home near Dallas, he used his computer to write for MDA about the importance of ALS research and the need to face life with a positive attitude. He was lovingly supported by his wife, Vickie, and their two children.

On Jan. 6 his struggle ended, eight years after his diagnosis.

When I think of Barry and Jim, I'll always remember the tragedy of their early deaths. I'll also think of the impact they made through their willingness to lend their time and insight whenever they were needed.

Both played important roles in our refutation of charges made by our disingenuous critics a few years ago that MDA didn't focus sufficiently on disability rights and that we err by making our first priority the search for cures. I think Barry gave the best answer to that in an ad for MDA, in which he was quoted saying, "Death is the greatest disability."

Robert Ross
Senior Vice President & Executive Director