The Multiple System Atrophy (MSA) Coalition™ founded in 1989, is a 501(c)(3) charitable organization (EIN: 74-2926378) devoted to improving the quality of life and building hope for people affected by MSA through a four-pillar mission:
· Providing patients and caregivers with trusted and compassionate emotional support
· Educating patients, care-partners and healthcare professionals with credibl
e, 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
OUR PROGRAMS
Offering assistance to patients and their families with vital emotional support, information and guidance .. Toll free Helpline - 866-737-5999: 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. Nothing is more important to us than helping MSA families. We have walked this path too. Educational materials: 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
by email: [email protected]
by phone: Support Hotline: 866-737-5999 / Business Line: 866-737-4999
by postal mail: MSA Coalition 7918 Jones Branch Drive, Suite 300, McLean, Virginia 22102
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/
The Annual Patient and Family Conference: Each year researchers and medical professionals make presentations that provide real-world assistance and valuable information to people whose lives have been impacted by multiple system atrophy. For those who are unable to travel, we live-stream the conference online and make the sessions available for later viewing. Expert MSA clinicians and research scientists as well as other health professionals (occupational therapists, speech therapists, physiotherapists etc) attend and present up to date information to MSA families on how to cope with the disease. Separate breakout sessions among MSA patients and caregivers are the highlight of this meeting as each group shares their concerns, forming strong bonds and lifelong friendships. Video recordings from the past 8 conferences are available. https://www.multiplesystematrophy.org/msa-resources/annual-conference/
OUR PROGRAMS
Offering support for investigators ...
Early Investigator Travel Awards: 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/
Don Summers Memorial MSA Travel Award: 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/
Funding vital research ...
MSA Coalition Research Grant Program: 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. Guided by the principles of the MSA Global Research Roadmap, a vision that we helped to create through our dedicated MSA advocacy work, The Multiple System Atrophy Coalition seeks to fund the most promising MSA research anywhere in the world. To date, we have reviewed over 150 research grant proposals and awarded funding to 42 multiple system atrophy research project grants at 30 institutions in 10 countries. In total, these projects have received $2 million in funding. For a complete list of funded projects and the latest updates see: https://www.multiplesystematrophy.org/msa-research/projects-funded/
Sponsoring healthcare professional education and scientific conferences ...
Continuing Medical Education: 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. Scientific Conference or Symposium Sponsorships: 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 (2021) - 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
American Autonomic Society Congress (2020) - Virtual
Alpha-Synuclein Congress (2015) - Innsbruck, Austria
Alpha-Synuclein Congress (2017) - Athens, Greece
Alpha-Synuclein Congress (2019) - Porto, Portugal
A leader in global networking and advocacy ...
Maintaining Important Connections: 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 chaired the advocacy working group at the Global MSA Research Roadmap meeting, helping to shape a new vision for the future of MSA research, which continues to guide our funding criteria. In 2018, we hosted the first-ever dedicated meeting of global MSA advocates and began building the MSA Global Consortium. We are committed 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. OUR FINANCIALS
The board of directors is currently comprised of 15 members, 12 of which have a personal or family connection to MSA. Many board members have direct experience with caregiving and with facilitating in person and online support groups. Three neurologists who see MSA patients also serve on the board. https://www.multiplesystematrophy.org/charity/board-of-directors/
OUR SCIENTIFIC ADVISORY BOARD
The MSA Coalition gets advice and assistance regarding our research funding strategy from our scientific advisory board comprised of world-renowned clinicians and scientific experts on MSA. These individuals are well connected with other researchers and pharmaceutical companies around the globe and make sure that MSA is kept on the agenda at major scientific conferences. https://www.multiplesystematrophy.org/charity/scientific-advisory-board/
OUR GENERAL ADVISORY COUNCIL
The MSA Coalition General Advisory Council is comprised of members of the MSA community with varied interests and experience. This diverse team provides guidance in their individual areas of expertise to best develop and maintain programs. They serve as a voice for the community, while sharing their professional input to ensure quality deliverables. OUR HISTORY
The MSA Coalition began in 1989 under the name “Shy-Drager Syndrome MSA Support Group” and was founded by Dorothy Trainor-Kingsbury, an MSA caregiver along with her husband's physicians Dr. Sterling Edwards and Dr. David Robertson. Dorothy had a strong desire to help other families facing this disease and so she initiated and began answering a support hotline from her home. The support line continues to this day and is answered by MSA Coalition volunteers experienced with caring for a loved one with MSA. 866-737-5999. (Dorothy Trainor-Kingsbury and Dr. David Robertson were also instrumental in inspiring the formation of the American Autonomic Society in 1990. https://americanautonomicsociety.org/aas-history/ )
Since 1990 annual support and educational meetings geared to MSA patients and their families, have been organized by the MSA Coalition culminating in the recent 30th anniversary conference held in Orlando last September attended by 230 people and live streamed to a worldwide audience. This 2-day conference is the largest and longest running conference devoted entirely to MSA held anywhere in the world. The Shy-Drager Syndrome MSA Support Group changed their name to the Multiple System Atrophy Coalition in 2012. In 2013 the board of directors voted to award their first five research grants for a total of $219,000. Since then the research program has grown to 42 grants totaling $2 Million and the MSA Coalition is now recognized as the global leader in MSA research funding by an advocacy organization. All MSA Coalition funded research projects can be viewed at: https://www.multiplesystematrophy.org/msa-research/projects-funded/
OUR PARTNERS
Current MSA Coalition partners include but are not limited to the following other MSA and related disease organizations: MSA NJ (Howell, NJ), Move Over MSA (Boise, ID), Blandford-Rees Foundation (Richmond, VA), CureMSA (Fremont, CA), CurePSP (New York, NY), Michael J Fox Foundation (New York, NY), MSA Trust (London, UK), MSA Belgium (Borsbeek, Belgium), ARAMISE (Orleans, France). We continue to welcome new organizations as they join us in the fight against multiple system atrophy. CONTACT US
Community members are encouraged to contact us via email: [email protected]
or by postal mail:
MSA Coalition 7918 Jones Branch Drive, Suite 300, McLean, Virginia 22102
or by phone: Support Hotline: 866-737-5999 Business Line: 866-737-4999
Please review our comprehensive website for complete information and resources: https://www.msacoalition.org
