About the Multiple System Atrophy Coalition

Mission – Programs – History

OUR MISSION

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 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

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. 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.

Educational materials:

The MSA Coalition offers print, DVD, online and downloadable resources for patients, caregivers and families. We recommend downloading our new edition of MSA: What You Need to Know. For other downloadable items visit the MSA Coalition resources page.

More Ways To Help

 

To self-order printed materials and DVDs CLICK HERE.

View videos on our YouTube channel.

Contact us directly for assistance:

eMail:

info@multiplesystematrophy.org

Phone:

Support Hotline: 866-737-5999 / Business Line: 866-737-4999

By postal mail:

MSA Coalition
7918 Jones Branch Drive
Suite 300
McLean, VA USA 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. 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 on our resource page.

Newsletter: The MSA Coalition produces a monthly e-Newsletter. View the archives and subscribe here.

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. Watch video recordings from the past 8 conferences here.

Offering support for investigators

Early Investigator Travel Awards:

The MSA Coalition provides travel awards to defray the costs of attending medical and scientific congresses in order to help attract talented early career investigators to the field of multiple system atrophy 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.

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.

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, 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 over 40 multiple system atrophy research project grants at 29 institutions in 10 countries. In total, these projects have received $2 million in funding. Go here for a complete list of funded projects and the latest MSA research updates.

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.

Scientific Conference 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 (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

A leader in global networking and advocacy

Maintaining Important Connections:

Our Global Advocacy initiative began in earnest in 2014 when the MSA Coalition spearheaded the Advocacy Committee at the Global MSA Research Roadmap Meeting in Las Vegas, helping to shape a new vision for the future of MSA Research. Co-chaired by MSA Coalition board members Pam Bower and Larry Kellerman, the advocacy working group presented four key goals to improve MSA support, education, research and awareness, and strongly called for more global collaboration in front of the more than 50 MSA researchers, US government National Institutes of Health (NIH) and pharmaceutical industry representatives who were present. Global MSA researchers in turn presented their key scientific goals to move the needle forward towards better treatments and a cure. With the advocacy and research findings from this meeting published in the prestigious journal Neurology, the Global MSA Research Roadmap article is now a highly cited publication influencing the field of MSA research and is also the backbone and the guiding force of the MSA Coalition’s Global Research Program.

In 2018 the MSA Coalition hosted the first-ever organized meeting dedicated to Global MSA Advocates during the International MSA Congress held in New York City. MSA Coalition board chair Cyndi Roemer took the lead at this meeting, welcoming representatives from the established MSA charities in Belgium, UK, France and USA (see Our Charity Partners below). Facilitated by Cyndi Roemer and National Organization for Rare Diseases (NORD) representative Debbie Drell, the meeting sought to gather ideas from the group on ways to better collaborate on advocacy and research initiatives, presenting a united front on the global stage. Representatives of CurePSP and the Michael J Fox Foundation also participated at the meeting, offering their considerable expertise on advocacy and research.

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. 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 MSA Treatment Pipeline page for a list of MSA investigational therapies currently in development.

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.

Each year we continue to partner with our sister charity in the US, 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 MSA Coalition is proud to have obtained the highest possible rating (Platinum) from Guidestar.

View our complete financial records: IRS form 990 – years 2011 through 2019 are available

Donate at: https://www.multiplesystematrophy.org/donate-now


OUR BOARD OF DIRECTORS

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 our very active and engaged Board of Directors. Read our bios here.


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. View bios of the Multiple System Atrophy Coalition’s renowned Scientific Advisory Board.

OUR HISTORY

Read All About the MSA Coalition’s Long History of Helping Those with MSA.

OUR CHARITY PARTNERS

Current MSA Coalition partners include but are not limited to the following MSA and related disease charity organizations:

USA

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)

UK

MSA Trust (London, UK)

BELGIUM

MSA Belgium (Borsbeek, Belgium)

FRANCE

ARAMISE (Orleans, France)

CONTACT US

Community members are encouraged to contact us via email: info@multiplesystematrophy.org

or by postal mail:

MSA Coalition
7918 Jones Branch Drive
Suite 300
McLean, VA USA 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

Donate at: https://www.multiplesystematrophy.org/donate-now

The MSA Coalition is honored

to have served

the MSA community

for over 30 years and counting