SOURCE: The ALS Association Florida Chapter

October 19, 2007 09:24 ET

House Passes Bill to Launch a National Registry for Lou Gehrig's Disease

TAMPA, FL--(Marketwire - October 19, 2007) - On Tuesday, the House of Representatives voted 411-3 to launch a national registry of patients living with ALS, also known as Lou Gehrig's Disease. The average life span of someone diagnosed with this fatal neuromuscular disease is 2-5 years. ALS, a disease for which there is no cure, claims the life of one American every 90 minutes.

The ALS Registry Act was introduced by U.S. Rep. Eliot Engel, D-N.Y., whose grandmother, Dora Engel, is believed to have died of ALS. The bill would authorize $89 million over five years to establish the registry at the Centers of Disease Control and Prevention. Its implementation would promote a better understanding of the disease, help determine causes and significantly enhance the efforts to find a treatment and cure for the terminal illness.

Florida House members voted unanimously to pass the ALS Registry Act. In addition, both Senator Nelson and Senator Martinez of Florida have signed as co-sponsors of the bill. Senator Bill Nelson understands the tragic effects ALS has on those who live with the disease. When Nelson was 24 years old and studying law at the University of Virginia, ALS took the life of his mother.

The ALS Registry Act's success in the House is a direct result of the relentless efforts of the ALS community. Events like The ALS Association National Advocacy Day each May have had a tremendous impact. "Advocacy Day gives patients the opportunity to share their story with their Senators and Representatives," said Chuck Hummer, a Florida man with ALS. "They see, face-to-face, why the ALS Registry Act is so important." The Florida Chapter sent a group of 15 Advocates including patients, caregivers, family and Chapter staff to Washington for this year's event.

The ALS Registry Act must now pass through the Senate. To date, 58 Senators have cosponsored the Act. "The ALS Registry Act can help us find clues to a cause of ALS," said Dara Alexander, President of The ALS Association Florida Chapter. "While the cure has not yet been discovered, there is care and a caring community." The Florida Chapter is dedicated to finding a cure for ALS while fighting on every front to improve living with such a devastating disease.

Contact Information

  • Contact:
    Amy Dunham
    813-637-9000 ext. 107