by Gary Wosk, Staff Writer

In honor of the courageous people fighting ALS (amyotrophic lateral sclerosis) and their caregivers, The ALS Association has launched the “ALS Across America” campaign for National ALS Awareness Month in May.

The “ALS Across America” campaign shines the spotlight on men and women from all walks of life who despite having ALS, or the fact that they are taking care of someone with this disease, think of and help others in similar circumstances before themselves.

“These special individuals reflect the spirit of the organization as they make a positive difference in their communities by expanding awareness of ALS and embodying the spirit of living life to the fullest,” said Gary A. Leo, president and CEO of The Association. “They are truly role models, a beacon of hope to all of society because they have not allowed a terrible disease to triumph.”

There is not one segment of society that has escaped the impact of ALS, commonly referred to as Lou Gehrig’s Disease, and the “ALS Across America” profiles reflect this diversity. The progressive, degenerative neuromuscular disease affects 30,000 Americans annually in this country. The average survival rate is two to five years from the time of diagnosis.

Throughout ALS Awareness Month, The Association and its nationwide network of more than 100 affiliates will reach out to communities across the country to educate the public about Lou Gehrig’s Disease and urge people to join The Association in the fight to make ALS a disease of the past. National ALS Awareness Month activities include proclamations issued by cities and states.

The annual National ALS Advocacy Day and Public Policy Conference, which is part of National ALS Awareness Month, has grown to be the single largest gathering of the ALS community and will be held this year, May 11-13, in Washington, D.C. People with ALS and families from across the country travel to the Nation’s Capitol to tell their stories in meetings with nearly every member of Congress, advance The Association’s public policy priorities, educate Congress about the true nature of this disease, and let them know why more must be done in the fight for a treatment and cure.

In the past year, advocates for The Association have helped accomplish the following:

• Introduced and passed the ALS Registry Act in the House of Representatives by an overwhelming 411-3 vote. The bill would authorize $89 million to establish a national ALS patient registry at the Centers for Disease Control and Prevention (CDC).
• Won the support of more than two-thirds of the Senate as cosponsors of the ALS Registry Act, leading the Senate Health, Education, Labor and Pensions Committee to pass the bill by unanimous vote.
• Secured nearly $3 million in funding to build upon and expand ALS registry pilot projects underway at the CDC, a $2 million increase during a year when most other health programs were cut or received little or no additional funding.
• Partnered with the Department of Defense as it provided $5 million to establish the first-ever ALS Translational Research Program.
• Enacted legislation that provides much needed resources to the Food and Drug Administration and will help to bring new treatments for ALS from the lab to the bedside as soon as possible.
• Advanced the fight in support of veterans, who are at a greater risk of ALS, by increasing funding for ALS research at the Department of Defense, including $10 million for Gulf War Research and $50 million for the Peer Reviewed Medical Research Program (PRMRP). Congress named ALS as one of only a small handful of diseases eligible for funding under the program.