MDA Highlights Poignant "Anyone's Life Story" Series
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 more than $324 million to ALS research and services beginning in the 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 was also an MDA researcher, a US 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:
**O.J. Brigance, a 43-year-old retired Baltimore Ravens player;
**Juri Kameda, a 50-year-old respiratory therapist from Palo Alto, Calif.;
**Eric Mattson, a 36-year-old US Marine and motivational speaker from Grapevine, Texas;
**Michael Gollin, a patent attorney and former MDA researcher from suburban Washington, DC;
**And Linn White, a 61-year-old teacher from De Pere, Wis.
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 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, DC, 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.