Before you get to know the Muscular Dystrophy Association, you need to know about Muscular Dystrophy. It’s a group of diseases that cause muscle weakness and lead to a decrease in muscle mass at time progresses.
Currently, there is no cure for this disease, and there are fewer than 200,000 cases in the United States.
This disease often occurs during childhood, and typically leads to a child needing a wheelchair down the road. Unfortunately, this disease typically shortens the life expectancy of those diagnosed.
This association doesn’t just help those with Muscular Dystrophy but aims to help other people with a neuromuscular disease.
What is the Muscular Dystrophy Association?
They’re an association that raises money for research, therapies and other technology to help those with neuromuscular diseases.
This association is the largest funding for neuromuscular diseases outside of the federal government and has helped fund over $1 billion since being founded.
By funding for multiple diseases, the hope is to use research from each disease to help advance the research of others. Altogether, the goal is to find urgent answers through their research.
Back in 1950, Paul Cohen held a meeting with other people associated with Muscular Dystrophy, which became the beginning of the association. Cohen, who was living with Muscular Dystrophy, wanted to raise funds quickly by finding celebrities to help promote their association.
They began the MDA Telethon, which is the most successful fundraising event on television in history before it came to an end in 2014. Just to give an idea of how big this event was Jimmy Fallon, Adam Sandler, and The Jackson 5 were just some of the celebrities that appeared on the show.
The purpose was to raise funds for neuromuscular diseases, which became a success.
What do they do?
Some important parts to the Muscular Dystrophy Association are the MDA Care Centers, MDA Resource Center and MDA Summer Camp.
Muscular Dystrophy Association supports the largest network of care centers that provide clinical care at top institutions.
Their resource center helps provide one-on-one support with specialists at no cast for the patients. Those with neuromuscular diseases can even attend their camp at no cost, which helps these patients learn life lessons and independence.
None of this happens without donations through their events. Throughout the year they have plenty of events that help raise money to continue their research and support those with neuromuscular diseases.
An example of one of their events is the MDA Team Momentum. This is a training program for all people to train for a half or full marathon. Participants help raise money throughout the process of their training for those with Muscular Dystrophy, ALS, and other life-threatening diseases.
Research continues, but the Muscular Dystrophy Association has seen the change since the 1950s. MDA states that boys with Duchenne muscular dystrophy have died in their teens in the past, but MDA has now seen men in their 40s living with this disease.
While the goal is to still find a cure, MDA has made progress in their research helping those affected by these diseases.
Throughout the years, MDA has expanded programs to help expedite finding new information. Altogether, the association is supporting more than 175 research projects worldwide.
The problem is that the process of this research is very lengthy and expensive. Muscular Dystrophy Association is very transparent with the process, breaking it down on their website with a timeline.
Besides research, they help treat patients and provide them with care. They’re an association that is all about family, and try to treat their patients like family. Overall, the Muscular Dystrophy Association hopes to see a family live a longer life and gain strength together.