Tuesday, January 17, 2012

Efforts toward enabling greater awareness of ALS' impact


There have been many efforts over the years to enable greater awareness of the impact of ALS. I learned of these through Linda Batty, who has been involved in many efforts toward improving ALS awareness.

Linda explained "Advocacy Week".

"There is a week in the USA called "Advocacy Weekwhere people from all over the US come to meet with their senators and representatives in Washington, D.C. to support various causes. ALS chapters participate in this event, and every year they like to send two or three Persons withALS (PALS) to meet with their congressmen.  Most of these PALS arrive in the nation's capital in wheelchairs, many already unable to talk except by computer. One can imagine the powerful message given by PALS via computer. The heartbreak in spouse's and children's faces sends its own message."

 In the year 2007, a bill was introduced, after efforts to recognize the need, for a registry of those affected by ALS ((ALS registry act H.R 4003/S.1353). In 2008, through the enactment of the ALS Registry Act, establishment of an ALS patient registry was made top priority. Enrollment began in 2010.

The representatives are also urged to include funding for ALS specific programs in the each Fiscal Year. Funding is required to allow enrollment, disseminate information about procedures, and to ensure that people in remote areas are aware of the existence of the registry. A registry would go a long way toward logging the exact number of cases, and spurring more initiative toward research and care.

This link takes you to the ALS Association's ALS registry webpage for more information and updates.ALS Association: Create a World without ALS.




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