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Multiple System Atrophy Coalition

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Nonprofit Overview

Causes: Health, Voluntary Health Associations & Medical Disciplines

Mission: The Multiple System Atrophy (MSA) CoalitionĀ® is a positive beacon of hope standing up to a little known, rare, insidious disorder. For over 30 years, the MSA Coalition has been devoted to improving the quality of life and building hope for people affected by multiple system atrophy by focusing on a four-pillar mission: Providing patients and caregivers with trusted and compassionate emotional support; Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information; Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure; Building a sense of community by connecting and unifying people affected by MSA

Results: The MSA Coalition is the premiere US nonprofit organization dedicated to support, education, research and advocacy for this devastating neurological disease. Thousands of participants benefit from the annual MSA Coalition Family Conference, which is live streamed and posted online. With multiple online discussion groups and a dedicated support line, someone is always there to help. As the host of the first-ever Global MSA Advocacy meeting, the MSA Coalition works with other like-minded charities to foster a community of support and care. As the leading nonprofit funder of global multiple system atrophy research, the MSA Coalition has a proven track record of catalyzing research collaborations, and with the advice of our world renowned Scientific Advisory Board, selecting and funding the most promising research efforts around the world. As of 2019, $1.7 Million has been granted to 36 MSA research projects at 20 research institutions. Learn more at http://www.multiplesystematrophy.org/ or call our support hotline tollfree 866-737-5999

Target demographics: Families affected by multiple system atrophy

Geographic areas served: United States and globally

Programs: Toll free support hotline, annual support conference for patients and families, research grants to scientists, education of physicians, advocacy

Community Story

6 ErinKnutsonW

Volunteer

Rating: 5

The Multiple System Atrophy Coalition has been a saving grace since the beginning. My mother, my hero, was diagnosed with MSA in late 2012. She fought hard and with determination to spread awareness about this rare and unknown disease. Sadly my mother lost her battle on Dec. 30th, 2016. Now I continue her fight. All along the way the MSA Coalition provided critical information, support, guidance, information, and friendship. My family has felt immense love from this whole team, all volunteers. The Coalition not only pushes the need for research funding, but provides an invaluable community for patients, caregivers, and loved ones. They offer hope to all, including family and friends of MSA patients who want to DO SOMETHING. The Coalition encourages fundraising and opportunities to raise awareness, get the word out there. My goal is to become and MSA Coalition board member when the timing is great. Thank you to Pam, Cyndi, Don, Carol, Judy, Vera, and the rest of this incredible team. You made the unbearable just a bit easier. RIP to my beautiful and courageous mom, Deborah.