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Nonprofit Muscular Dystrophy Association seeks donations during pandemic

Nonprofits are doing their best to serve the vulnerable during the pandemic.

News 12 Staff

Apr 10, 2020, 7:29 PM

Updated 1,534 days ago


Nonprofits are doing their best to serve the vulnerable during the pandemic.

The Muscular Dystrophy Association relies 100% on donations. The MDA has taken a major hit financially, which affects everything, including getting patients the help they need.

About 250,000 people in the United States live with muscular dystrophy, ALS or other related neuromuscular diseases. MDA serves more than 1,400 people in Connecticut.

The nonprofit has stayed creative throughout the crisis, by bringing telemedicine to patients, along with virtual events with doctors and researchers.

Lynn O'Connor Vos is the president and CEO of MDA. She says the nonprofit has set up an emergency fund which will help them continue virtual care.

O'Connor Vos says now more than ever, the association needs donations.

"They don't have necessarily a balance sheet, so when a pandemic like this hits, it's almost existential, they really need help," said O'Connor Vos.

Dr. Monkol Lek is an assistant professor at Yale University Medical School. His lab researches the genetics of neuromuscular diseases and how to translate that into therapy. He is also a patient. Lek has limb-girdle muscular dystrophy and does all his research from his wheelchair.

Lek says the impact of COVID 19 on the MDA will have short and long term negative consequences for patients.

This year, the nonprofit is expected to take a 30% cut financially.

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