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Tom T.1

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2 reviews

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

Rating: 5 stars  

On November 25, 2013 Liz and I were told that she was diagnosed with possible Multiple System Atrophy – Cerebellum (MSA-C), a very rare terminal neurological disease that resembles Parkinson’s with no known cure. Unfortunately, MSA progresses rapidly and within 2 or 3 years of symptoms it impairs walking and balance. Most are in wheelchairs by the 4th year and eventually become bedbound. The average person lives about 6 to 10 years after the initial symptoms start. Liz passed within 5 years on December 20, 2018.

We could not of made this journey without the support and resources of The Multiple System Atrophy Coalition. This organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information on their website that is specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their website is one of the first places that I went to looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My family thanks all of the dedicated volunteers.

Role:  Client Served
 

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

Rating: 5 stars  

On November 25, 2013 Liz and I were told that she was diagnosed with Multiple System Atrophy (MSA-C), a very rare terminal neurological disease that resembles Parkinson’s with no known cure. After receiving this diagnosis, we immediately wanted to know everything about MSA-C and found The Multiple System Atrophy Coalition website. We found that The Multiple System Atrophy Coalition organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their organization is one of the first places that I go looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My Family and Friends thank all of the dedicated volunteers.

Role:  Client Served