Leading the Way: MDA’s Critical Support for People with ALS

by Kathleen Hagan on Tue, 2014-04-15 10:47
Article Highlights:
  • For 60 years, MDA has led the charge against ALS and is the world leader in funding ALS research, services, education and advocacy.
  • MDA's leadership in the fight against ALS began in the early 1950s when Eleanor Gehrig, widow of beloved Yankees first baseman Lou Gehrig, was searching for a way to fight the disease that had taken her husband's life.
  • MDA has made progress against ALS every decade since then, funding more research than any other voluntary health organization in the United States.

For many, amyotrophic lateral sclerosis is a fast disease. Once diagnosed, the average life expectancy for a person with ALS can be as few as three to five years. When Ben Thomas received his ALS diagnosis at the age of 29 — just three months after the birth of his only daughter, Emmerson — his world was turned upside down.

MDA is the world leader in funding ALS research and services.

No one does more to fight ALS than MDA.

MDA is helping people live longer, fuller lives.

More than anything, Ben wants to be there for his daughter as she grows up; he has always dreamed of being a father. However, Ben realizes that he may not be able to be physically present in her life for much longer, so he has spent many mornings writing and dictating letters to her.

The Muscular Dystrophy Association, with its research, services, education, advocacy and support, offers Ben hope. Ben is one of thousands of individuals living with ALS who receives care annually at MDA’s specialized clinics. Through its equipment inventory program, MDA has assisted the Thomas family by helping to provide hospital beds, lifts and shower chairs. And when Ben needed to use a wheelchair about a year after his ALS diagnosis, he took advantage of the program and tested several power chairs so he could find the right one before making this important purchase.

A proud history

Ben is just one example of an individual who has reaped the benefits of MDA’s leadership in fighting ALS. That leadership began in the early 1950s when Eleanor Gehrig, widow of beloved Yankees first baseman Lou Gehrig, was searching for a way to fight the disease that had taken her husband’s life in 1941. She served more than a decade as MDA National Campaign Chairman. 

MDA has been involved with making progress against ALS every decade since then, and today it is the world leader in funding ALS research. MDA funds more ALS research than any other voluntary health organization in the United States, dedicating almost $325 million to ALS research and health care services since its inception.

MDA continues to foster its partnership with Major League Baseball, and 2014 marks the 75th anniversary of Lou Gehrig’s famous “farewell to baseball” address on July 4, 1939.

The early ALS research MDA conducted was focused mainly on basic nervous system physiology. Later, studies of nerve-to-muscle signal transmission began, followed by attempts to isolate genes related to ALS. Today, MDA not only supports early-stage research into what causes ALS, but it also conducts research that looks at potential therapeutic targets.

Some recent MDA-supported advances and clinical trials in ALS research include:

  • A mouse with an ALS-causing mutation in the FUS gene is developed, shows characteristics of ALS in humans and should accelerate research.
  • A protein called HSP104 is found to break apart protein “clumps” seen in ALS and may be a step toward “clump-busting” ALS therapies.
  • A study conducted through the MDA ALS Clinical Research Network finds that a high-carbohydrate, high-calorie diet was better tolerated and associated with fewer adverse events in those with ALS than a regular or a high-fat, high-calorie diet; it supports an earlier study showing mild obesity is associated with improved survival in ALS.
  • An MDA-supported study to evaluate the effects of the NeuRx Diaphragm Pacing System in people with ALS is ongoing; the DPS electrically stimulates the diaphragm muscle to aid breathing. (See a webinar about this trial at vimeo.com/87026087.)

MDA support and services

MDA not only funds ALS research, but it also provides support to individuals with ALS, offers services and resources to them, and focuses on advocacy and community events.

In 2013 alone, MDA committed more than $7.8 million to services for families living with ALS. In recent years, MDA has created two specialized programs to aid in its fight against ALS:

  • MDA ALS Clinical Research Network: Established in 2008, the Network is a consortium of five MDA-supported ALS centers (Atlanta, Boston, Houston, New York and San Francisco); each receives $60,000 annually to help fund the infrastructure necessary to collaborate on ALS trials.
  • MDA Neuromuscular Disease Registry: In early 2013, MDA launched this Registry with the goals of improving survival and quality of life for people with ALS and three other neuromuscular disorders, and making clinical trials in these diseases more efficient. It is being piloted at 25 MDA clinics.

Why does MDA fund these services and ALS research? Because it’s committed to saving and improving lives — and defeating ALS.

MDA ALS Caregiver's Guide

If you or a loved one is living with ALS, be sure to read the MDA ALS Caregiver’s Guide at mda.org/publications/mda-als-caregivers-guide. The Guide will help you as you help your loved  one through the progression of the disease. It also will help you with your own journey as an ALS caregiver. To learn more, contact your local MDA office at (800) 572-1717 or mda.org/locate.

The MDA/ALS Newsmagazine offers a robust collection of ALS blogs that feature a stream of “ALS voices” from all walks of life. The blogs cover the ups and downs of living with ALS from the perspectives of those who know it best: people with ALS, their family and friends, caregivers, researchers, advocates, therapists and others.

ake a moment to visit the blogs at alsn.mda.org. And if you’re interested, we’d love for you to share your thoughts and experiences with others in the MDA/ALS community. Send your submission or a link to your blog to publications@mdausa.org.

Kathleen Hagan is a writer in Chicago. 

Editor's note: Be sure to read No White Flags, a profile of former NFL player Steve Gleason who is devoting his efforts to raising ALS awareness.

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