Library Trainer

This weekend is Labor Day which means picnics, BBQs, and relaxing afternoons spent enjoying the last few days of summer. For me Labor Day weekend always brings back memories of the Jerry Lewis MDA Telethon. I vividly remember the first one I watched in 1979 because I watched and learned about neuromuscular diseases while we were in the process of packing to evacuate from our home on the coast in Florida as Hurricane David, a deadly Category 5 storm, approached.

Years went by and I did not think much about the MDA Telethon again until I became a firefighter. On Labor Day weekend fire departments across the nation support the MDA with their “Fill the Boot” campaign.

Now many years later I watch the telethon every year with a mix of emotions. This is my 10-year anniversary of being diagnosed with the neuromuscular disease Charcot-Marie-Tooth Disease (CMT). Luckily the effects I experience from CMT are very mild—the worst being some pain with walking or prolonged activity as well as overall fatigue. I am blessed that this disease will not shorten my life, but this is not the case for many of the more than a million Americans who suffer from neuromuscular diseases—diseases such as Amyotrophic Lateral Sclerosis (ALS) which can cause death within 3-5 years.

While my health insurance covers all of my treatment for CMT, it does not cover the research that is needed to find treatments and cures for these diseases. Since many of these diseases have had their genetic cause identified there is a good chance that they can be cured or at a minimum have reduced pain and suffering through stem cell therapy or other forms of treatment.

As you celebrate Labor Day weekend with your families and friends please consider a small donation to the Muscular Dystrophy Association during the telethon, online, online auction, or if you see firefighters collecting for Jerry’s Kids, fill their boots! Every penny raised counts and goes to benefit the lives of more than a million Americans afflicted with neuromuscular diseases.

Some facts:

• 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.
• The majority of contributions to MDA come from individual donors.
• MDA is the largest nongovernmental sponsor of muscle and nerve disease research.
• Funded almost entirely by individual private contributions, MDA seeks no fees from those it serves.
• MDA dedicates 78.3 cents of every dollar it spends directly to research, services and education.
• MDA sends more than 4,000 youngsters with muscular dystrophy to accessible MDA summer camps each year, at a cost to MDA of $800 per camper. There’s no charge to families.
• Tens of thousands of people visit MDA’s 220 clinics and 35 MDA/ALS centers every year.
• MDA awards research grants to more than 300 teams of scientists and physicians worldwide.

Thanks for taking the time to read this post and have a safe and relaxing holiday!