TUCSON, Ariz., May 1, 2013 — National ALS Awareness Month begins today and the Muscular Dystrophy Association honors those living with the disease by featuring five unique online stories in MDA’s ALS: Anyone’s Life Story® series.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, destroys skeletal muscles, including those used for breathing and swallowing, causing progressive weakness, paralysis and death, usually within five years of diagnosis. MDA has devoted $324 million to ALS research and services since the early 1950s when Lou Gehrig’s widow, Eleanor Gehrig, served as MDA’s honorary national chair.
Each week throughout May, MDA will profile stories of grace and courage featuring a sports champion, an attorney who also was an MDA researcher, a U.S. Marine, a teacher, and a respiratory therapist — all advocates for MDA.
Anyone’s Life Story showcases strong and compelling personal stories about those who battle ALS every day,” said MDA Senior Vice President of Health Care Services Michelle Morgan. “In addition to MDA’s comprehensive health care services and worldwide research program, this is another way we combat ALS: by raising public awareness of the experiences of those living with the disease, and the dedicated people who love and support them.”
Featured in MDA’s ALS: Anyone’s Life Story series are:
ALS affects family members and communities as well as those diagnosed with the disease. There is an additional feature on MDA’s Anyone’s Life Story website that is provided for families and friends who would like to share their stories about their loved one’s ALS journey called ALS: It’s My Story, Too.
MDA provides more research and health care services for people living with ALS than any other nonprofit health organization in the world. The Association is currently funding 63 international ALS research projects, at a cost of more than $20 million.
“MDA has served the ALS community for more than 60 years,” said MDA President and CEO Steven M. Derks. “When someone is diagnosed with ALS, it can be overwhelming. MDA is there to answer their questions and to provide help through MDA clinics across the country and hope through our worldwide research program. We have seen amazing advances in biotechnology research in the last five years, particularly in identifying new genes and pathways that are involved in ALS, and these advances have opened new avenues for research and therapy development. MDA is steadfastly pursuing all such research strategies — moving us closer to effective treatments and, ultimately, a cure for this relentless disease.”
In February 2013, during an unprecedented public hearing held by the FDA’s Neurology Division in Washington, D.C., members of the ALS community — families, researchers, clinicians and medical professionals — urged the FDA to revise its lengthy drug trial and review process. MDA was a catalyst in prompting the FDA to conduct this hearing and invite those living with the disease to tell their emotional stories.
MDA is the world leader in providing ALS services and funding ALS research. Over the years, MDA has invested $324 million in its ALS research, services and information programs. In addition, MDA operates 200 medical clinics across the county, 43 of which are designated as ALS-specific research and care centers.
MDA established the MDA ALS Clinical Research Network to streamline collaboration on ALS research and support tests of experimental treatments, with locations at Methodist Hospital (Houston), Massachusetts General Hospital (Boston), Columbia University (New York City), Emory University (Atlanta) and California Pacific Medical Center (San Francisco).
MDA is the nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, ALS and related diseases today affecting more than 1 million Americans. It does so by funding research, providing comprehensive health care and support services, and through advocacy and education.
In addition to funding more than 250 neuromuscular disease research projects worldwide, MDA facilitates support groups for individuals and families, and provides local summer camp opportunities for thousands of youngsters with progressive muscle diseases.