MDA is offering the survey so individuals and their families can share what barriers they face and what concerns they have. The survey takes about 20 minutes to complete and can be accessed online until May 15.
“It's more important than ever to make sure that everybody's voice is heard, because that's how we can build the best programs at MDA," said Christopher Anselmo, who works on MDA's Healthcare Partnerships Team, "but that's also, again, not just MDA, it's how can we build a society that's, you know, takes all these different viewpoints, all these different voices into account and treats them with respect and can actually address some of their concerns."
Anselmo is a market intelligence manager who helps manage MDA's partnerships with biotech and pharmaceutical companies.
“One of the good things about the survey is just being able to hear from everybody and to know that everybody that wants to participate in it, your voice is going to have a really big impact on a lot of what we can do going forward,” he said.
Anselmo was diagnosed with limb-girdle muscular dystrophy (LGMD) as a young adult. When he was 17, he was in a car accident and doctors noticed he had a high level of creatine kinase in his blood. After following up with doctors, he was diagnosed and told he would likely have symptoms at some point during adulthood.
After graduating college, Anselmo noticed he was experiencing muscle weakness and other symptoms. He was diagnosed again.
Anselmo connected with MDA about 10 years ago while visiting a neurologist for LGMD, where he met a representative from an MDA Care Center.
"That was really one of the things that helped me to, you know, embrace kind of who I was, embrace what was happening to me, and to kind of see that I wasn't alone in this," he said. "And I could live again, a full life. I could do all these things, just have to do them a little bit differently."
The MDA focuses on a wide range of conditions, including LGMD, Duchenne Muscular Dystrophy (DMD) and other forms of muscular dystrophy, as well as mitochondrial diseases, myopathies, ion channel diseases, neuromuscular junction disorders and motor neuron diseases such as ALS.
He explained that there is a lot of diversity in these conditions and everyone has different experiences.
Anselmo also pointed out that assumptions are often still made of people with neuromuscular conditions. He shared that MDA is trying to help educate the public about the experiences of people with neuromuscular conditions and hopefully advocate for change where there are barriers.
"One of the best things that MDA is trying to do is just to kind of provide the resources, help fill in the information gaps so that people can thrive in society," he said, "and the more people that are able to do that, you know, that's a shining example that yes, we can actually live full lives, we can have jobs, we can go to college, we can get advanced degrees, we can get married, have families, live independently."
He emphasized that every perspective matters.
“One of the advantages of connecting with an organization like MDA, is that you can provide direct input, you can say, hey, this has been a huge problem for me," Anselmo said. "I live in this state. It's much different than this other state, or it might not be as much of an issue or, you know, here is my perspective on something that had happened to me."
MDA estimates that it serves about 2,500 families in Western New York.