To the editor:
Governor Rick Scott recently signed a proclamation declaring May as Amyotrophic Lateral Sclerosis Awareness Month in Florida, to help spotlight the tremendous challenges being faced by individuals living with ALS in our state as well as the importance of speeding worldwide research to find a cure.
ALS, also known as Lou Gehrig's disease, is a progressive, fatal, neurodegenerative disorder of the upper and lower motor neurons. Striking healthy, fit adults in the prime of life, ALS often proves fatal within two to five years of diagnosis.
National ALS Awareness Month focuses public attention on a disease that affects more than 30,000 American adults, with an additional 5,000 new cases diagnosed every year. For as-yet-unknown reasons, ALS kills the nerve cells that control voluntary muscles (including those used for breathing and swallowing), causing debilitating weakness and ultimately paralysis.
As part of ALS Awareness Month, The ALS Association will hold its annual National ALS Advocacy Day and Public Policy Conference in Washington, D.C., May 13-15, 2012. Advocates from across the country will share the ALS story and urge Congress to step up the fight to find a treatment and cure. This year, advocates will focus on continuing funding for vital ALS research programs, including the National ALS Registry and the Department of Defense ALS Research Program. The National ALS Registry may become the single largest ALS research ever created and not only can help us determine the true impact of ALS on the country, but also learn what causes the disease and potentially ways to prevent it. The ALSRP is promoting translational research and specifically is designed to find a treatment. Thanks to the efforts of people with ALS, their families, caregivers and other advocates, Congress has provided a total of nearly $60 million for the two programs to date. This year, advocates also will urge Congress to support the MODDERN Cures Act. The legislation seeks to remove barriers that have blocked the development of a treatment and also provides incentives for biotech and pharmaceutical companies to develop treatments for ALS as quickly as possible.
It's been more than 70 years since Lou Gehrig lost his life to this insidious disease, and your continued support of our advocacy efforts is critical. To find out how you can help, go to www.alsafl.org.
Together, we'll create a world without ALS.
Kim A. Hanna, President
The ALS Association Florida Chapter