TUCSON, Ariz. - Tens of thousands of Americans are living with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), and May is ALS Awareness Month, thanks to a 1992 declaration by the U.S. Congress to help spotlight the tremendous challenges being faced by individuals living with ALS, as well as the importance of speeding worldwide research seeking treatments and cures for the fatal disease.
“ALS is a master of destruction, and I can testify to that firsthand. My beautiful mother had ALS, and the courage and grace she showed throughout her whole journey with ALS was nothing less than extraordinary,” said Nancy O’Dell, the Emmy Award-winning “Entertainment Tonight” co-anchor (see video). “So how do you go up against a master of destruction? Well the only way is to create a masterpiece of compassion and hope, and that’s what MDA’s ALS Division is giving people with ALS.”
Throughout May, the special Muscular Dystrophy Association online series “ALS: Anyone’s Life Story” will profile an individual living with ALS every day. The 31 honorees are from 20 states (Arizona, California, Colorado, Connecticut, Florida, Georgia, Iowa, Maryland, Massachusetts, Minnesota, Mississippi, Missouri, New Jersey, New Mexico, New York, South Carolina, Texas, Utah, Virginia and Washington), and each will be featured online (http://awareness.als.mda.org), sharing what it’s like to live with ALS.
The first week’s “ALS: Anyone’s Life Story” honorees include Frank Wright from Polk City, Iowa; Amanda Okidika from Jackson, Miss.; Bonnie Guzelf from Tempe, Ariz.; Jeff Lester from Lebanon, Mo.; Tony “Pete” Gegor, Mechanicsville, Md.; Curt Ziemke, Rossmoor, Calif.; and Kimberly Kim, Alpharetta, Ga.
MDA National ALS Ambassador O’Dell welcomes every visitor to the innovative and interactive ALS Awareness Month site (http://awareness.als.mda.org) that also features a special “ALS: It’s My Story Too” section for anyone affected by ALS and their loved ones, and a gallery of artwork created by people living with ALS. The O’Dell videos describe her mother’s valiant battle against ALS and the tremendous support her family received from MDA — far and away the leading source of help and hope to families with loved ones diagnosed with ALS.
“ALS Awareness Month is important because people need to know that ALS is a sporadic disease that truly could be anyone’s life story,” said MDA President & CEO Gerald C. Weinberg. “Plus, the only thing worse than a diagnosis of ALS, would be that diagnosis without the unparalleled ALS health care services and worldwide research being funded by MDA.”
To help support ALS research, people can text “MDA” to 20222 and make a $10 donation to MDA that will be charged to a bill they will receive from their cell phone carrier. Message and data rates may apply.
ALS attacks the nerve cells that control muscles, ultimately resulting in paralysis of all voluntary muscles, including those used for breathing. Average life expectancy for people with the disease is three to five years after their diagnosis.
About Anyone’s Life Story
The "Anyone’s Life Story" series was inspired by the personal saga of fitness pioneer and businessman Augie Nieto of Corona del Mar, Calif., who learned he had ALS in 2005 at age 47. Nieto is the founder of the internationally successful Life Fitness cardio exercise equipment company. He and his wife, Lynne, serve as co-chairs of MDA’s ALS Division. They are the driving force behind MDA’s Augie’s Quest fast-track research initiative for ALS.
MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.
MDA (mda.org) is the world’s largest nonprofit provider of ALS services and funder of ALS research. The Association’s unparalleled health care services, research, advocacy and education programs provide help and hope to more than 1 million Americans affected by ALS and more than 40 other neuromuscular diseases. Nationwide, MDA maintains a network of some 200 hospital-affiliated clinics (38 of which are designated as MDA/ALS centers), and orchestrates hundreds of support groups to help families living with progressive muscle diseases. Learn more about the organization leading the fight against ALS by visiting als-mda.org or by calling 800-572-1717.
MDA was the first nonprofit organization to be recognized with a Lifetime Achievement Award from the American Medical Association (“for significant and lasting contributions to the health and welfare of humanity”).