May is ALS Awareness Month!

May is Michigan’s ALS Awareness Month

At the request of our Chapter’s Public Policy Chair, Todd Noeske, Governor Granholm has declared May to be ALS Awareness Month for the state of Michigan! Please show your support and spread awareness this month by wearing a red ALS Awareness wrist band, passing along this newsletter, or joining our Chapter for some of our upcoming events. Get your band today at:

www.alsa-michigan.org

From May 9th to the 11th, members of the ALS Community, including our own Chapter staff Stacey Orsted (Executive Director) Kristen Munyan, RN & Denise George, RN (Patient Services Coordinators), will gather in Washington D.C. to advocate for ALS research funding and legislation. Advocacy Day is the largest ALS Community gathering in the United States each year.

Past Advocacy Day events have played a major role in such legislative advances as the 24-Month Medicare Waiver, increased funding for ALS research and the passing of the ALS Registry Act, which created the first nationwide ALS patient registry at the Centers for Disease Control and Prevention (CDC). These efforts also saw the approval of regulations that recognized ALS as a service related disease and established a presumptive disability ruling for ALS at the Social Security Administration. This has helped people with ALS and their families to receive timely access to disability benefits.

This year’s attendees will continue to work for increased research funds for ALS and continued development funds for the ALS Registry.

For more information on ALS Advocacy Day, check out www.alsa.org/policy/alsday.cfm.