MDA’s Fight Against ALS

Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a disease of the motor neurons or nerve cells that control voluntary muscle movement. For unknown reasons, motor neurons die and the muscles they control become weak and then paralyzed. Death, usually from respiratory complications, typically occurs between three and five years after diagnosis. However, about 10 percent of people with ALS live more than 10 years and some survive for decades.

The Muscular Dystrophy Association’s involvement with 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. Mrs. Gehrig served more than a decade as MDA National Campaign Chairperson. Since inception, MDA has dedicated more than $210 million to ALS research, services, and information programs.

MDA/ALS Centers

MDA maintains some 225 hospital-affiliated clinics nationwide, providing specialized medical services for people affected by any of the more than 40 neuromuscular diseases under MDA’s umbrella, including ALS. In addition, 37 clinics are designated as MDA/ALS Centers.

MDA clinics and MDA/ALS centers are staffed by multidisciplinary teams of health professionals skilled in the diagnosis and medical management of ALS, including symptom control, medical interventions and therapies to help maintain the highest possible quality of life.

MDA/ALS Center teams may include neurologists, therapists (physical, occupational, speech, respiratory), nutritionists, social workers, pulmonologists, gastroenterologists and medical equipment specialists.

MDA Means Help for Today

To help individuals and families defray the cost of medical equipment, MDA assists financially with the following items:

• Wheelchairs
• Leg braces
• Communication devices
• Repairs to wheelchairs and leg braces

MDA loan closets lend durable medical equipment to those unable to obtain prescribed equipment through alternate resources. Depending on availability, the loan closets offer, at no cost, hospital beds, patient lifts, wheelchairs, walkers, shower benches, transfer boards and communication devices. The loan closets also gratefully accept equipment donations.

You are not alone. The ALS Division offers the following ongoing activities:

• Support groups 
• Educational seminars
• Home visits       
• Community outreach & advocacy
• Phone Friends Support Network
• Internet chats

A variety of award-winning materials about ALS are available at local MDA offices and on the MDA Web site (some also are in Spanish):

• MDA/ALS Newsmagazine
• Facts About ALS (booklet)
• Everyday Life with ALS: A Practical (Guide (book)
• Breathe Easy: Respiratory Care in Neuromuscular Disorders (booklet)
• Breathe Easy: A Respiratory Guide for  People Living With Neuromuscular Diseases (video)
• Breath of Life: (video for medical professionals)

MDA Means Hope for Tomorrow

ALS Research

MDA supports a worldwide program of ALS research, from basic science to therapy development to clinical trials.

Early in 2006, with funding raised through the Augie’s Quest initiative, MDA launched a landmark screening of the entire human genome based on more than 1,000 DNA samples from individuals with ALS. Undertaken through the nonprofit Translational Genomics Research Institute (TGen) in Phoenix, the project is the first and most extensive of its kind. In less than a year, the screening yielded a list of suspicious gene changes that may predispose a person to nonhereditary ALS.

Following up quickly on these findings, in 2007 MDA joined forces with the ALS Therapy Development Institute, creating the largest privately funded ALS drug development project in history.

Combining the passion and dedication of nonprofit research with the entrepreneurial and scientific spirit of a biotechnology company, the three-year, $36 million project applies cutting-edge technology to identify drugs that act on suspected biochemical pathways, with the goal of speeding the development of effective pharmaceutical therapies.

Other critical MDA-funded ALS research contributions include:

• Sponsorship of an online database registry, the ALS Connection, which gathers statistics on people with ALS and assesses care practices to learn more about ALS causes and effective treatments
• Sponsorship of national and international scientific meetings on ALS research
• Funding for hundreds of research projects around the world aimed at curing ALS
• Involvement in the development of Riluzole, the only approved drug therapy for ALS

• Local special events & programs
• New/used medical equipment donations
• Volunteer opportunities
• Sponsorship opportunities
• Personal financial planning
• Gift planning
• Monetary donations
• Community outreach