Keeping in Touch July-August 2008

by Gerald C. Weinberg on July 1, 2008 - 9:29am

QUEST Vol. 15, No. 4

Ask any 10 people what they’d save if their houses were burning down, and at least nine will answer “my photographs.”

The ability to capture moments like lightning bugs in a jar, to be pulled out and examined at leisure, is more than just a pastime. Photos anchor us in history, reminding us of the foundations upon which we’ve built our lives and values.

Looking around my office, which is filled with framed photos of celebrities, scientists, physicians, individuals and families with whom I’ve had the honor of working, is like looking at a time capsule of MDA history. These photos remind me of where we’ve been and give me hope for where we’re going.

More than just documentation of people and places, photos also are a way to express artistic vision. This issue celebrates photography both as an art and as a craft that’s accessible to people with muscle diseases. The beautiful images of photographer Carl Yeager are complemented by the “beautiful” technology that allows 14-year-old Orlando Valle to follow in his footsteps.

Summer definitely is a time for taking photos! MDA summer camp, Stride & Rides, Lock-Ups — there are plenty of fun activities happening in the MDA community this time of year.

Less photogenic but just as memorable, research initiatives continue in all the diseases under MDA’s umbrella, including less well-known disorders such as autoimmune diseases of muscles.

It’s hard to take a snapshot of “advocacy,” but this important activity has been a staple of MDA’s mission from the very beginning. For example, in 1966 MDA lobbied for federal legislation making public facilities accessible to people with disabilities. In the 1990s, we were early supporters of the Americans with Disabilities Act or ADA (see "ADA Roundup 2008" for an update on how the ADA continues to transform the American landscape). And in the beginning of this century, MDA National Chairman Jerry Lewis testified before Congress in support of the MD-CARE Act, which brought needed governmental support to muscular dystrophy research.

In this issue, MDA Vice President of Advocacy Annie Kennedy begins a regular column about MDA’s advocacy activities in the nation’s capital. Annie served as an MDA summer camp volunteer for 10 years, then spent another eight years working with MDA families through local offices in Baltimore and Virginia, before moving to Tucson to head MDA’s ALS Division. She brings her deep knowledge of what’s important to MDA families into her advocacy role — and she wants to bring you into that role as well! Read her column to learn more, and be sure to visit the new advocacy pages on the MDA Web site,

With every best wish for a fun-filled, memory-filled, photo-perfect summer —

Gerald C. Weinberg
President & CEO

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