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Review for Multiple System Atrophy Coalition, Charlotte, NC, USA

Rating: 5 stars  

I am posting this testimonial in memory of my wife Carol, who passed away April 19, 2018, just 9 days from what would have been our 45th wedding anniversary.
My wife was diagnosed with Multiple System Atrophy (MSA) in 2013. The neurologist who gave her the diagnosis mentioned the disease ultimately will affect her automic systems. We had no clue to what extent that would be, or what we needed to consider for the future care of my wife. Most doctors that she was seeing asked “what is that” when we informed them of her diagnosis. We usually had to educate the doctors and medical staff as what her disease was and what it could or would affect. That was a very frustrating experience for both my wife and me. In researching her disease i came to find out about the Multiple System Atrophy Coalition, being one that usually does not join such organizations, joined, hoping to fibd out what we could expect. I am ever so happy that we did. Not only did we find out what we could expect from other members of the coalition, but we found a group of people so willing to help us with questions we had, suggestions on what we could do, or use in combating the affects of my wife’s disease. Th coalition was addressibg the frustration we experienced dealing with doctors and other medical personnel by working to raise the awareness of this dreadful disease. The coalition sponsored meetings, webinars and fund raisers to that end, along with group sessions that educated the caregivers in vital subjects such as Medicare/Medicaid coverage. We would have been totally lost had it not been for our joining this very caring organization.

Role:  General Member of the Public