My mother, Eileen Dyas, was diagnosed with MSA the summer before she passed away in October 2017 at the age of 68. As a result, we (unfortunately) found out about the MSA Coalition and all of its resources a bit late. Since her passing, we've utilized the Coalition's
Mission: The Multiple System Atrophy (MSA) Coalition® 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
My mother, Eileen Dyas, was diagnosed with MSA the summer before she passed away in October 2017 at the age of 68. As a result, we (unfortunately) found out about the MSA Coalition and all of its resources a bit late. Since her passing, we've utilized the Coalition's resources, supported its mission, and attended the annual patient and family conference which helped us connect with others in the community, further understand the disease and provided us with needed closure. With its focused mission to support patients and families, educate the medical community, advocate on behalf of MSA patients, and support global research funding and brain donation, the MSA Coalition is doing important work to find a treatment and cure for this rare and terrible disease.
My husband was diagnosed in 2012. At that time the Dr. from Mayo Clinic in jacksonville, Fl. told us to go home and google MSA and find a local Dr., and go from there. The shock of finding the specifics of this horrendous disease was mind boggling. Thankfully in searching the web we found this coalition. It has helped us immensely, and we feel that we are not alone in our battle.
We deeply appreciate the MSA Coalition for their support of patients and caregivers. It was life changing to go to their annual conference and meet others who are living with MSA. Their website hosts a number of educational resources. Coalition Facebook pages link the patient and caregiver communities around the world. Money raised for research is critical as the US government funds nothing. MSA Coalition activities are effectively run by an all-volunteer board. We are impressed with their work!
At times I feel the msa coalition is the only place I can turn to get educated on my moms disease as doctors don't seem to understand the scope of it. I am thankful everyday for these volunteers who are available to us 24/7 to us .. What a great organization to donate to
I've volunteered for this organization for 10+ years. It is amazing to see their growth over the last two years. It's fantastic that finally, in 2014, the organization will be funding meaningful multiple system atrophy research.