ALS Awareness Month, Advocacy Day Conference
Lighting the Way for Better Treatments and a Cure

The “Flame of Hope” will be shining even more brightly in May this year during the annual National ALS Awareness Month, a month long series of activities geared to increase public awareness of ALS, raise funds for research and advocate for public policies that will benefit people with ALS. 

The spirit of the “Flame of Hope,” featured in the new National ALS Awareness Month advertisement created by The ALS Association (ALSA), also will embody the 2005 National ALS Advocacy Day and Public Policy Conference in Washington, D.C., May 9-11. The theme of the eighth annual event is “Lighting the Way for a Treatment and Cure.”

In newspapers across the country, scores of readers who see the advertisement will be drawn to a prominently displayed white flame with words underneath that read in part: “May is ALS Awareness Month. Join The ALS Association in lighting the way for a treatment and cure.” 

Throughout National ALS Awareness Month, ALSA and its nationwide network of chapters will reach out to communities across the country to educate the public about Lou Gehrig’s disease and urge people to join ALSA in the fight to make ALS a disease of the past. At National ALS Advocacy Day, ALS advocates − PALS (People with ALS), caregivers and families − will deliver ALSA’s message to members of Congress, show them the true nature of the disease, and work with them to increase funding for ALS and promote health care policies that support people with ALS and their families.

“The synergy that is generated by these events raises the spirits of all of us in the ALS community who share the common goal of finding a treatment and cure for the disease,” said ALSA President and CEO Gary Leo. “The events also empower the ALS community and arm them with the tools they need to make a difference in the fight against ALS.” 

Hundreds of advocates from ALSA chapters, including people with ALS and their loved ones, are expected to converge on the Capitol to learn the latest information on ALS research and advocacy strategies at ALSA’s 2005 National ALS Advocacy Day and Public Policy Conference. The headquarters for this year’s conference is the Washington Plaza Hotel. 

In 2004, more than 600 advocates from 43 states attended the three-day conference − both National ALS Advocacy Day records. The entire ALS community − PALS, their caregivers and families as well as physicians and researchers − was represented at National ALS Advocacy Day. In fact, these advocates told the ALS story and shared their experiences, concerns, and hopes in Capitol Hill meetings with more than 380 different members of Congress.

This year’s event promises to be even more empowering. Shonda Schilling, wife of Boston Red Sox pitcher Curt Schilling, actress Kate Linder from “The Young and the Restless” and actor Alan Rosenberg, who played an ALS patient on the CBS series “The Guardian,” are expected to participate in the three-day event.  Baseball legends David Cone and Tommy John also will participate.

One of the highlights of this year’s conference will be the Second Annual Candlelight Vigil, held on Monday evening, May 9, at the Jefferson Memorial overlooking the Potomac River Tidal Basin. The vigil is a moving tribute to those who have fallen to ALS and those still fighting the disease. It also is an opportunity for advocates to reflect on why the ALS community gathers in Washington, D.C., each year. As hundreds of advocates light their candles under the evening sky, the ALSA community demonstrates to the world that ALSA must continue to light the way for a treatment and cure for ALS.

ALSA’s 2005 National ALS Advocacy Day and Public Policy Conference will begin on Monday afternoon, May 9, with the Second Annual Candlelight Vigil taking place later that night; continue with workshops on Tuesday, May 10; and culminate with National ALS Advocacy Day on May 11.

The impetus for National ALS Advocacy Day occurred in 1992 when a contingency organized by and representing ALSA met in Washington, D.C., with U.S. senators and representatives as well as First Lady Barbara Bush.  

Since 1997, National ALS Advocacy Day has realized many significant victories for the ALS community. For example, federal funding for research has increased by more than 300%, from $15.1 million in 1998 to nearly $50 million in 2005. ALSA has generated new sources of federal funding, including from the Department of Defense and Department of Veterans Affairs. In addition, ALSA has enacted historic legislation to eliminate the 24-month Medicare waiting period for people disabled with ALS, and ALSA helped establish a presumptive disability ruling for ALS at the Social Security Administration, a change that allows many PALS more timely access to disability benefits. 

In 1992, the U.S. Senate passed a resolution designating the month of May as “National ALS Awareness Month.” The resolution, introduced by then Sen. Bob Graham (D-FL), called on the people of the United States to “observe the month with appropriate ceremonies and activities.”

The themes of courage and promise that resonate throughout National ALS Awareness Month and during National ALS Advocacy Day will be reinforced by ALSA’s new public service announcement “Keep Hope Alive,” approved by and airing on major national television networks.

For more information about ALSA and on how to become involved in the fight against ALS, call 800-782-4747. To learn more about ALSA’s 2005 National ALS Advocacy Day and Public Policy Conference, visit the National ALS Advocacy Day section of the ALSA website or call the Advocacy Hotline toll-free at 877-444-ALSA.