THE MULTIPLE SYSTEM ATROPHY COALITION INC

The MSA Coalition provides a toll free support hotline to members of the multiple system atrophy community. The hotline features live interaction with former MSA caregivers offering emotional and educational support. Our volunteer board members spend many hours on the telephone with patients and caregivers, staying in touch over weeks and months to provide encouragement and a listening ear. We connect them with sources of information, mailing packets and emailing links. Nothing is more important to us than helping MSA families. We have walked this path too.

Multiple System Atrophy is a rare and little-known neurodegenerative disorder and education for patients, their care partners and families, as well as healthcare professionals is greatly needed. The MSA Coalition offers print, DVD, online and downloadable educational resources to help educate members of the community. We recommend downloading our new edition of MSA: What You Need to Know. For other downloadable items see www.MultipleSystemAtrophy.org/resources
To self-order printed materials and DVDs: https://msa.authenticmerch.com/product-category/education/
View videos on our YouTube channel: https://www.youtube.com/msacoalition Or
Contact us directly for assistance:
by email: [email protected]
by phone: Support Hotline: 866-737-5999 / Business Line: 866-737-4999

The Multiple System Atrophy Research Fund is used to encourage and finance critically important MSA research leading to the identification of causes, improved diagnostic methods and more effective symptomatic and disease modifying treatments: Helping to bring us closer to a cure. The Multiple System Atrophy Coalition seeks to fund the most promising MSA research anywhere in the world. To date, we have reviewed over 125 research grant proposals and awarded funding to 37 multiple system atrophy research project grants at 20 institutions in 10 countries. In total, these projects have received $1.7 million in funding. For a complete list of funded projects and the latest updates see: https://www.multiplesystematrophy.org/msa-research/projects-funded/

The MSA Coalition provides travel awards to junior scientists and medical students in order to defray the costs of attending medical and scientific congresses while presenting their MSA related research. The awards help attract talented early career investigators to the field of multiple system atrophy research and their participation at globally renowned congresses allow them to gain vital experience and contacts while promoting MSA research. Many of the early career investigators who have received MSA Coalition Travel Awards are continuing to contribute important findings to the overall knowledge of MSA. Details and a list of past awardees are available here: https://www.multiplesystematrophy.org/msa-research/early-investigator-travel-awards/

The Don Summers Memorial MSA Travel Award was established in 2014 in memory of past president Don Summers who led the organization from 1999 to 2010. Endowed by Sylvia Summers, the award consists of a $2000 cash prize and a plaque which are given in recognition of outstanding MSA research by an early career investigator. Presented annually at the American Autonomic Society Congress, this award promotes and encourages MSA research by providing early career researchers an incentive to study this rare disease and to receive recognition and financial support for doing so. The award winner is selected in partnership with the American Autonomic Society. Details and a list of past awardees are available here: https://www.multiplesystematrophy.org/msa-research/don-summers-memorial-travel-awards/

The MSA Coalition supports Continuing Medical Education training about MSA for healthcare professionals and sponsors important scientific conferences where MSA research is steadily gaining more notice. The MSA Coalition considers formal requests from organizations and researchers to co-sponsor events, programs, conferences, symposia, or congresses that are aligned with the MSA Coalition’s strategic goals and mission and which will clearly benefit those attendees who are also so aligned.

Global scientists interested in MSA now look to the MSA Coalition for leadership and rely on our financial backing to ensure important scientific conferences continue to be staged. Below is a sample of recent conferences that would not have been possible without our financial support.
International MSA Congress (2016) - Salerno, Italy
International MSA Congress (2018) - New York City, USA
International MSA Congress (2020) - Tokyo, Japan
American Autonomic Society Congress (2016) - San Diego, USA
American Autonomic Society Congress (2017) - Clearwater Beach, USA
American Autonomic Society Congress (2018) - Newport Beach, USA
American Autonomic Society Congress (2019) - Clearwater Beach, USA
Alpha-Synuclein Congress (2015) - Innsbruck, Austria
Alpha-Synuclein Congress (2017) - Athens, Greece
Alpha-Synuclein Congress (2019) - Porto, Portugal

The MSA Coalition produces a monthly e-Newsletter with distribution to over 10,000 subscribers. View the archives and subscribe here: https://us14.campaign-archive.com/home/?u=2b3cd8b3502e1cee6272918c5&id=09746f6fde

In-person support groups: The MSA Coalition maintains contact with over 50 support groups all around the USA and Canada which welcome MSA families. A list of these support groups can be downloaded from our resources page: https://www.multiplesystematrophy.org/msa-resources/
We work closely with several individuals and organizations that facilitate MSA specific support groups. Those seeking to start a local group are encouraged to be in touch with us for advice and a supply of educational materials.
Online Support Groups: The MSA Coalition sponsors several online discussion groups for MSA families including the public MSA Coalition discussion group, the private groups MSA Buddies and MSA a Patient’s Journey as well as MSA Research News. In addition there are 9 private regional online discussion groups covering the United States. See: https://www.multiplesystematrophy.org/msa-resources/

As a Platinum member of the National Organization for Rare Diseases and a member of the Coalition of Patient Advocacy Groups at the National Institutes of Health, the MSA Coalition stays up to date with changes in healthcare and research policy and other issues important to the rare disease community. In 2014, the MSA Coalition led the advocacy working group at the Global MSA Research Roadmap meeting and in 2018, hosted the first-ever dedicated meeting of global MSA advocates. We are dedicated to continuing to take a leadership role ensuring greater collaboration while advocating for the unmet needs of the MSA community.
Besides hosting our own annual conference for patients and families, representatives of the MSA Coalition travel around the US and Europe attending conferences in order to promote our cause and network with researchers, movement disorder neurologists and other healthcare professionals, pharmaceutical company representatives as well as other advocates for MSA or other rare neurological diseases over the course of a year.

This networking has directly led to an increase in 1. the number of physicians who find our organization and recommend us to their patients 2. the number of researchers applying for research funding 3. the number of advocacy organizations who partner with us 4. the number of pharmaceutical companies now focused on developing MSA therapies (Refer to the MSA Coalition’s treatment pipeline for a list of investigational therapies currently in development https://www.multiplesystematrophy.org/msa-research/msa-treatment-pipeline/)
Here is a partial list of conferences we regularly attend: American Autonomic Society Congress, Movement Disorder Society Congress, National Organization of Rare Disorders Rare Disease Summit, International MSA Congress, MSA New Jersey Annual Conference, Alpha-Synuclein Congress, CurePSP Family Conference, University of Maryland Atypical Parkinson Symposium, Coalition of Patient Advocacy Groups (NIH).

Promoting Multiple System Atrophy Awareness Month (March): In 2014, the MSA Coalition was instrumental in pushing for the introduction of House Resolution 518 to US Congress supporting federal recognition of Multiple System Atrophy Awareness month. https://www.govtrack.us/congress/bills/113/hres518/text
Each year we continue to partner with our sister charity, MSA New Jersey to encourage grass-roots advocates to obtain Multiple System Atrophy Awareness Month proclamations from their state and local officials. Our goal is to obtain proclamations in all 50 US states.