My Nonprofit Reviews

Our family has benefited from the MSA Coalition and its forerunner, the Shy-Drager Support Group, for nearly 20 years. When my brother was diagnosed with MSA in 2004, after several years of worsening symptoms, multiple system atrophy that even most physicians had never heard of. Vera, Bill, Pam, Don, Carol, Judy, and others worked tirelessly, providing support and understanding when we were down, practical solutions to the daily challenges of dealing with MSA, and open discussions on potential treatments. The advice on prevention and aggressive treatment of infections was far and away the best medical advice we received, which I’m sure has led to better and longer lives for many MSA patients. Their sponsorship of local support groups and the annual MSA conference was invaluable in lessening the sense of isolation associated with this rare and debilitating disease. Although my brother unfortunately is no longer with us, he would have been deeply gratified to see the growth of this informal network into the MSA Coalition that has been a gamechanger for MSA patients and their families. They are a tremendous resource for patients and caregivers, offering practical advice on dealing with the day-to-day challenges of MSA caregiving, the healthcare system, and financial and legal issues. The MSA Guide is an Their advocacy efforts have increased awareness of this disease both in the general public and the medical community, leading to better supportive care for MSA patients. Finally, the MSA Coalition has been groundbreaking in their support of research on causes, diagnosis, and treatment of this rare disease that had been largely overlooked by the research community.

Our family discovered the volunteers that eventually became the Multiple System Atrophy (MSA) Coalition 20 years ago and has benefited from their advice and support. Members of this organization have worked tirelessly to aid patients and their loved ones who suffer from multiple system atrophy. Through education of the medical profession, patients, caregivers, families, and the general public, and through fundraising for research, this organization has helped improve both survival and quality of life for those with MSA.