My Nonprofit Reviews
Review for Multiple System Atrophy Coalition, Charlotte, NC, USA
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.