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

Rating: 5 stars  

My dad, Marc, was diagnosed with MSA-C in 2015. At the time, my family essentially knew nothing about this rare disease and we needed to better understand his diagnosis. When we learned that there is no curative treatment for MSA, we committed our time to understanding his symptoms, collaborating with doctors and finding ways to improve my dad's quality of life. Over the last four years, we've established the best symptom management care plan for my dad, of which we completely attribute to the MSA Coaltion.

As a soon-to-be graduate with a Masters in Social Work, I see first-hand the efficiency and dedication of the MSA Coalition in providing MSA patients, families and caregivers with the most optimal resources, research, support and education. When you really pause to consider how rare and complex this disease is, it feels reassuring and comforting to know that the coalition is wholeheartedly focused on helping those affected by MSA navigate this journey. Each conference, webinar, support group and fundraising effort is thoroughly thought through and the information and wealth of knowledge the coalition shares with the community is unparalleled.The MSA Coalition also provides guidance on all things MSA-related, from the most durable medical equipment to recommendations for specific therapies. The sense of hope and abundance of resources our family has received from the coalition has completely changed our lives. I encourage anyone impacted by MSA to become involved with this wonderful organization because the MSA Coalition will change your life too!

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