ST. LOUIS — On a beautiful day in Forest Park, dozens of people brought hope to kids and adults with Muscular Dystrophy by just taking a long walk.
The Muscular Dystrophy Association used the walk to raise money for support, care, and research on these diseases that affect a patient's muscles. It brings together people with muscular dystrophy and their advocates, a chance for some to reconnect in St. Louis and share stories.
"This is my son Holden, he is 13 months old and he's got Duschenne Muscular Dystrophy," explained Holden's mom, Amber Alesi. "The diagnosis was devastating. I mean you have expectations and dreams for your children when they're born and none of them involve diseases like this."
There currently is no cure for neuromuscular diseases, but MDA empowers people to live their lives to their fullest potential.
"Our son Ryan passed away in 2006," added Chris Hawn. "We're here to celebrate just being together as a community. Being here for the Muscular Dystrophy Association."
5 On Your Side's Mike Bush was the emcee of the 2022 MDA Muscle Walk of Missouri on May 1.
"This is more than just a walk. This is a chance to see familiar faces and empower our kids," Bush told the crowd.
Funds raised at the walk help people in St. Louis and across America.
"Money is essential. Unfortunately, it's essential to make some of these things happen," said Jennifer Hawn.
"I'm filled with a lot of hope because of all the treatments through trial right now, "Alesi told us. "I'm very excited about what possibilities might be for Holden in his future."
Research on muscular dystrophy and other diseases
MDA has committed more than $1 billion in funding since it began. They aim to accelerate breakthroughs in the search for a cure and treatments for these diseases. Neuromuscular disorders include amyotrophic lateral sclerosis (ALS), multiple sclerosis, muscular dystrophy and other muscular atrophy.
Research MDA supports is directly linked to approved, life-changing therapies. People living with these diseases use medication, physical therapy, surgery and other treatments. These can improve the quality of life and delay the progression of these diseases.
MDA's MOVR platform is a collection of data from healthcare professionals, genetic information, and patient-reported data. It is an acronym for neuroMuscular ObserVational Research. The data can be used to create and inform clinical trials. MOVR includes data from seven diseases:
- Amyotrophic lateral sclerosis (ALS)
- Becker muscular dystrophy (BMD)
- Duchenne muscular dystrophy (DMD)
- Facioscapulohumeral muscular dystrophy (FSHD)
- Limb-girdle muscular dystrophies (LGMD)
- Pompe disease
- Spinal muscular atrophy (SMA)