My Nonprofit Reviews

When at 52, I noticed that something was very wrong, both physically and mentally, my journey to diagnosis began through years and multitudes of medical specialists and two misdiagnoses which caused substantial costs, unnecessary / risky treatments and emotional turmoil for myself as well as my family. As all known diseases/disorders were ruled out, I was left with a diagnosis that is very rare, no cure, no treatment and aggressively fatal. The Multiple System Atrophy Coalition has been a tremendous source of knowledge and support navigating as we navigate the indignities my brain inflicts on my withering body. This support includes virtual online support groups, lists of the very few knowledgeable specialists across the globe, and fundraising for the very few research projects undertaken each year. I have passed through the stages of disability to mostly bed-bound now. The isolation is devastating which makes the online support so valuable in sustaining my hope and mental fortitude. I am 62 years old with a loving husband two sons in their early 20s. I'm not certain what each day holds for me except for my faith and hope.

What do you do when you are diagnosed with a rare, terminal, neurodegenerative disorder with no cure? Struck down in my early 50s with children still at home, and a career I loved but could no longer function at the same level? All the internet searches were so disheartening and most doctors have no experience with it which delays diagnosis and symptom management by years. I found the MSA coalition and there were other people like me all over the world! This international group advocates for research, fundraising and provides support for patients and caregivers. It is so appropriate that March is MSA Awareness Month and I have passed the 5-7 year prognosis celebrating my 60th birthday March 6th! Yes, I can no longer walk, swallowing and eating are difficult, my vision has been affected, and I am mostly bedbound. But I'm still here and thankful for every day I am given.