July 22, 2004

ON TOM BUSH

A valued member of our MDA family, Tom Bush, retired on May 28 following a distinguished career that included several decades of government service as well as 10 years in MDA’s headquarters here in Tucson, Ariz., serving as MDA’s director of Online Services.

Tom, who’s been affected by spinal muscular atrophy since childhood and who uses a motorized wheelchair, came to work for MDA in 1994. He brought with him decades of experience that we knew would be directly applicable to MDA’s mission. In particular, we knew Tom’s experience would be useful in helping establish MDA’s presence on what was popularly known at the time as “the information superhighway.”

	Tom Bush, recently retired, served as MDA’s director of Online Services.

Tom, a New Jersey native who received a bachelor’s degree in industrial engineering from Rutgers University in New Brunswick, had worked since 1965 with the State of New Jersey. There he’d held several positions in the Department of Transportation, Department of Civil Services and Treasury Department, gaining expertise in such areas as transportation, personnel administration, computer information systems and construction and maintenance of facilities.

Appointed the State of New Jersey’s director of the Office of Disabilities Management in 1992, Tom was instrumental in coordinating the implementation of the recently signed Americans with Disabilities Act (ADA) with the Attorney General’s Office and the Governor’s Office, and served on the Governor’s ADA Task Force.

Tom joined our staff after relocating from New Jersey to Arizona in 1993, first serving as MDA associate director of Program Services.

It was apparent on meeting him that Tom embodied a unique set of qualities, including penetrating intelligence, personal warmth, an unfailing sense of humor and a bulldog-like tenacity on issues that mattered to him.

Tom brought to his work at MDA the same kind of passion and rigorous intellect that had characterized his government career. An important part of Tom’s duties involved management of MDA’s first foray into the world of online information, the MDA Forum on CompuServe, which was launched on Aug. 15, 1994.

The CompuServe Forum provided an online community for people with neuromuscular diseases, including bulletin boards, real time “conferences” with other members and featured guests, and a library section including information files available for downloading such as research updates.

The MDA Forum was a success, although its benefits were only available to those who subscribed to the CompuServe service.

With the exponential expansion of the World Wide Web in the mid-1990s, it became apparent that MDA needed to establish an online presence that would be accessible by all Internet users.

With assistance from Real Networks and AT&T, MDA’s Web site at mdausa.org was online by the mid-1990s, initially in a rudimentary form consisting of a few pages of information. In 1997, Tom was named MDA’s director of Online Services, and MDA’s Web site began to undergo a major expansion.

Some of the many additions to the site in the years of Tom’s tenure at MDA included the creation of information pages for each of the more than 40 neuromuscular diseases targeted by MDA; the inauguration of an ongoing calendar of live chats; the creation of an online library of video clips; the launching of two more public MDA Web sites, a Spanish-language site at mdaenespanol.org and an ALS-specific site at www.als-mda.org; and the establishment of MDA’s private-access clinical research site for medical professionals.

By early 2004, shortly before Tom’s retirement, our main Web site had attained a volume of nearly 6,000 pages of information. The site was receiving visits from nearly 5 million users annually and some 12,000 questions and other e-mail inquiries.

It should be noted that, in addition to his commitment to the enhancement of MDA’s online services, Tom maintained a broader interest in the concerns of people with disabilities.

He serves on the Board of Directors of Linkages, a Tucson-based organization dedicated to assisting persons with disabilities in finding employment with cooperating companies.

He’s also a commissioner on the City of Tucson Disability Issues Commission, vice president of the Architectural Barriers League, a member of the University of Arizona ADA Transportation Development Team and a member of the statewide planning committee for the State of Arizona assistive technology grant project.

Tom has never been hesitant to speak out on issues of importance to him. As a person with a disability, he felt strongly, in 1996, that the then newly proposed memorial to President Franklin Delano Roosevelt should include a statue depicting the president in a wheelchair, even though FDR’s disability was kept hidden from the public during his lifetime.

Tom, along with members of MDA’s National Task Force on Public Awareness, addressed his belief in writing to Sens. Daniel Inouye and Mark Hatfield, co-chairmen of the FDR Memorial Commission.

After much public debate, it was decided that a statue of FDR in his wheelchair would indeed be included in the memorial, giving credence to the belief of Tom and others that the reality of FDR’s disability should be a visible part of his historical legacy.

In addition, Tom has appeared on the national broadcast of the Jerry Lewis MDA Labor Day Telethon, speaking out on issues of importance to people with disabilities, such as the need for employers to invest in this overlooked sector of the job market.

One person who has been influenced by Tom’s example and who has worked alongside him on numerous occasions is Chris Rosa of Flushing, N.Y., who serves both on MDA’s Board of Directors and on MDA’s National Task Force on Public Awareness. Chris is 37 and has Becker muscular dystrophy.

“Tom has been an extraordinary role model for me and all people affected by neuromuscular diseases,” Chris says. “He takes the most holistic approach to advocacy of anyone I’ve ever met. Every aspect of his life is suffused with leadership and spirituality. Indeed, for Tom, advocacy is more than a means to the end of social justice for people with disabilities. It is his calling, his ministry."

Tom is now enjoying a well-earned retirement, which will undoubtedly allow for greater time spent with his wife, children, grandchildren and his friends. But I’ve no doubt that his ingenuity and tenacity will find new missions and new issues to fix upon.

So here’s to Tom Bush. Thanks, Tom, for your friendship and the positive spirit you always brought to your work here at MDA. You have my special gratitude for the tremendous advances made during your tenure to realize our goal of developing a comprehensive Web presence that would be of genuine, ongoing help to people affected by neuromuscular diseases.

With every best wish...

The Ross Report Archive