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The ALS Association's Advocacy Day
and Public Policy Conference

May 11 - 13, 2008
Washington DC


To view the Conference's program, click HERE.

To register, click HERE.

The ALS Association Finds Success at the National ALS Advocacy Day and Public Policy Conference

Pictured (From left to right): Ellita Lewis, Congresswoman Carolyn McCarthy (NY-4th), Jackie Reinhard, Mary Nagle, Fern Cohen and Louise Foley

From Monday, May 14 through Wednesday, May 16, ALS advocates from fifty states gathered for The ALS Association's National ALS Advocacy Day and Public Policy Conference. The conference was full of events, including a moving candlelight vigil at the World War II Memorial, advocacy-related workshops, and a ceremony of excellence. The conference ended with a successful day on Capitol Hill with PALS, family members, friends and caregivers meeting with their U.S. Representatives and Senators to ask for support with the ALS Registry Act and funding from the Department of Defense.

The Chapter represented Greater New York and Northern New Jersey with 48 delegates, including 5 PALS, reaching out to 28 U.S. Representatives and our New York and New Jersey Senators.

The ALS Registry Act (H.R. 2295/S.1382) was introduced in the House of Representatives by Congressman Eliot Engel (NY-17) and Congressman Lee Terry (NV-2) and in the Senate by Senator Harry Reid (NV). To date, over 180 members of the House and 12 members of the Senate have co-sponsored, showing their support for people living with ALS.

The establishment of a national ALS registry will help identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation's efforts to find a treatment and cure for ALS.

Additionally, advocates asked members to sign a letter of support to Defense Secretary Robert Gates requesting funding for ALS specific programs at the Department of Defense (DOD). Studies, including those conducted by the DOD, Department of Veterans Affairs and researchers at Harvard University, repeatedly have shown that ALS occurs at a greater rate in military veterans. By funding ALS specific programs at the Department of Defense, Congress will enable important ALS research to continue at DOD, help to determine why those in the military are at a greater risk of the disease, and ensure that our nation takes appropriate action to protect the health and lives of our military men and women who risk their own lives in defense of this country. Importantly, research conducted by the DOD also will yield important clues and data about ALS that will benefit all people suffering from the disease and will help this nation make progress in finding a treatment and cure for ALS.

This past conference marked the 10^th year for The National ALS Advocacy Day and Public Policy Conference. Past successes include: increased annual funding for ALS research from $15 million to more than $53 million; the enactment of historic legislation to waive the 24-month Medicare waiting period for people with ALS; legislation authorizing $290 million in funding to improve and expand the availability of respite care services; and securing nearly $1 million in Congressional funding to establish the building blocks for a national ALS Registry at the Centers for Disease Control and Prevention (CDC).


Pictured: (Top Row) Theresa Lewis, Peter Vinci, Peter John Vinci, Bernadette Vinci; (Center Row): Mary Lewis, Phyllis Silver, Ann Vinci, Kayvan Freeman, Jody Wiesel, Marie Castronovo; (Bottom Row) Stan Silver