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Building Hope for Multiple System Atrophy

Building Hope for Multiple System Atrophy

Hope for multiple system atrophy (MSA) patients has traditionally been tough to come by. From the 1960s, when MSA was first diagnosed (then known as Shy-Drager Syndrome (SDS)) through 2010, progress in understanding the cause and funds for critical research were limited. This is not to say progress was not made. Several research centers with autonomic disorder specialization and scientific organizations like the American Autonomic Society worked diligently conducting research to find the cause, develop diagnostic and symptom treatment protocols, and to test potential therapies. This work now serves as a strong foundational building block.

A New Era of Hope for Multiple System Atrophy

In 2011 the nonprofit SDS/MSA Support Group, which was first established in 1989, made the decision to expand its vision from solely supporting patients and caregivers to a 4-pillar mission which included emotional support for the MSA community, patient and physician education, advocacy and awareness, and encouragement and funding of the most promising multiple system atrophy research. Under the leadership of Don Crouse, Vera James, and Judy Biedenharn, and with the council of Drs. David Robertson and Tom Chelimsky, the organization changed its name to The Multiple System Atrophy Coalition® and embarked on building the premier national charity with world-wide reach for all affected by MSA.

Rebuilding a charity was not an easy task! It took countless hours by a very small group of dedicated volunteers to think through the changes and then implement them. Within a year major progress was made and continues:

  • Officially changed the name to The MSA Coalition®
  • Built a new website ( with a focus on educational content such as MSA – what You Need to Know
  • Established the MSA Research Grant Program with dedicated funds and a world-class Scientific Advisory Board (SAB) in charge of vetting all research proposals received by The MSA Coalition.
  • Expanding the quality and reach of our Annual Patient and Family Conference, which now exceeds 175 in-person attendees and is live streamed globally to over 3,000 more viewers
  • Began expansion of the Board of Directors from five members to fifteen, broadening the range of skills and talents to support our mission.

By the end of 2011 the initial changes were complete and progress was being made. In the years prior to 2012 the charity raised an average of $10,000 to $25,000 per year. Beginning in 2011 with the announcement the new 4-pillar mission donations began to increase.

  • 2012 $54,500
  • 2013: $206,800
  • 2014: $498,100
  • 2015: $1,020,000
  • 2016: $862,700
  • 2017: $939,100

This increase in revenue has given The MSA Coalition the ability to begin making a real difference on behalf of those suffering from MSA. The biggest reason for hope in the eyes of many patients is research. Without research treatments and a cure will never be found. Over the past 4 years the MSA Coalition has funded 36 research grants from around the world totaling $1.6 million. Each and every grant has been scored and vetted by the SAB and many guest reviewers. If there is a potential conflict the reviewer recuses themselves from scoring and discussing that particular project. After the grants are scored and ranked The MSA Coalition Board of Directors reviews and votes to fund the top research grant applications. Where possible, connections on similar proposals are made in an effort to encourage collaborations among researchers and institutions. This process means that only the most promising research is funded by The MSA Coalition. As such, a diverse range of studies have been funded from 25 institutions and 30 researchers in 9 different countries. “Being good stewards of the money raised at the grass-roots level is always at the forefront of every financial decision we make. The MSA Coalition is extremely proud of its transparent and non-biased research grant process,” said Carol Langer, Treasurer of the MSA Coalition.

Other hidden benefits of the MSA Coalition’s research grant program that are bringing new optimism to multiple system atrophy research, include:

  • These grants often help fund the work of young investigators meaning they choose to focus their research on MSA rather than other areas.
  • Through the diligent work of Pam Bower, The MSA Coalition’s research committee chair, several global collaborations on important research have been started.
  • The infusion of grass-roots donated research dollars has provided all MSA researchers with new energy and optimism about finding better diagnostic markers, treatments, and potential cures.

In addition to funding research the MSA Coalition is also leading the push for better global collaboration and data sharing, which will speed the process of improving patients quality of life. In the past few years, The MSA Coalition has provided sponsorship funds for multiple research meetings including primary sponsorship of the past two International MSA Congresses, and MSA specific sessions at both the American and European Autonomic Society Scientific Meetings. These meetings are critical for researchers from around the world.

Fostering Collaboration

To further streamline use of resources The MSA Coalition encourages other advocacy organizations, foundations, and large donors to utilize and participate in its established research grant program. Due to the rare nature of MSA there are a limited number of researchers and potential grant applicants. As such, The MSA Coalition desires to share its SAB and grant application process to ensure that research funds from as many MSA charities as possible are being used in the most efficient manner and that researcher time and efforts are not being wasted on duplicative processes and work. Charities and foundations participating in the MSA Coalition research grant process are included as observers in the SAB review process, and can choose to fund the highly scored research proposals that meet their individual criteria for funding. It is an open and transparent review and voting process for all funders. These charities, Foundations, and Individuals have contributed substantially to past MSA Coalition grant programs: MSA Trust, Cure PSP, MSA NJ, Move Over MSA, the Rex Griswold Foundation, Patrick Costigan, and the Blandford-Rees Foundation.

MSA Global Advocacy Meeting Hosted by MSA Coalition March 2018To continue building hope for multiple system atrophy, The MSA Coalition is now leading an effort to unite multiple system atrophy charities in a collaborative consortium. On March 1-2, 2018, The MSA Coalition hosted the first ever MSA Global Advocacy Meeting in New York City in conjunction with the 6th International MSA Congress. The meeting, led by Cyndi Roemer, Chair of The MSA Coalition, featured lecturers by the National Organization for Rare Disorders (NORD) on how to build a consortium and by the Michael J Fox Foundation on their research grant program. The meeting also offered breakout sessions on various topics from advocacy, education and support, research, and fundraising. It concluded with sharing of learnings and new ideas and with plans to build a consortium of global cooperation among MSA advocacy organizations.

The past 5 years truly mark the beginning of an era of hope for those suffering from multiple system atrophy. The MSA Coalition promises to continue its transparent, mission driven work to build collaboration among advocates and researchers with the ultimate goal of delivering more than just hope. The desire is to shift from an era of hope to a new era of results that deliver improved and earlier diagnosis, both symptomatic and disease modifying treatments and ultimately a cure to eradicate MSA from the Earth!

Real hope for multiple system atrophy patients is in reach! Support our efforts by fundraising for the MSA cause. We are united to defeat MSA!

How do you think we are doing? Let us know in the comments section!


Multiple System Atrophy Coalition Sponsors the 6th International MSA Congress and 1st Global MSA Advocacy Meeting

Multiple System Atrophy Coalition Sponsors the 6th International MSA Congress and 1st Global MSA Advocacy Meeting

The International Multiple System Atrophy Congress brings together top researchers, clinicians and pharmaceutical companies to stimulate global collaboration in the urgent search for better diagnostic tools and treatments for MSA, a rare and fatal neurodegenerative disease. The MSA Coalition is a proud sponsor of this year’s Congress, hosted by NYU Langone Medical Center. In addition, the MSA Coalition has initiated the First Global meeting of MSA Advocacy groups to be held in conjunction with the scientific meeting.

CHARLOTTE, NC, February 23, 2018 – The Multiple System Atrophy (MSA) Coalition today announced its platinum-level sponsorship of the 6th International MSA Congress and 1st Global MSA Advocacy Meeting, hosted by NYU Langone Medical Center in New York City. The only international scientific and educational event devoted entirely to multiple system atrophy, the Congress begins on March 1, 2018 — which also marks the start of Multiple System Atrophy Awareness Month — and runs through March 3. The world’s most prominent MSA researchers and advocacy groups will be attending with a goal of expanding collaboration aimed at improving patient support, diagnosis, and symptomatic treatment, while working toward a potential cure for this rare and always fatal disease.

The International MSA Congress will bring together scientists and clinicians to address new discoveries and to generate ideas for future research in this long-neglected field. Global specialists in autonomic and movement disorders, neurologists, and neuroscientists are expected to attend. The congress will feature a series of lectures given by invited, world-renowned international experts on MSA and will include a keynote lecture by Nobel Laureate Dr. Stanley Prusiner.

“The International MSA Congress is the single most important gathering of MSA researchers and advocacy groups,” said Horacio Kaufmann, M.D., Director of NYU Langone’s Dysautonomia Center. “We are very thankful to the MSA Coalition for its premier sponsorship of this Congress and NYU are proud to be the first ever US host of this exciting event. With a global gathering of the best MSA researchers and top advocates, real progress can be made in understanding all of the research that has recently been completed in many institutions and a collaborative roadmap can be completed. With limited research dollars available for MSA, a shared roadmap provides the best hope for making progress against this horrible disorder.”

Advocacy groups from around the world, concerned with awareness, support, and research for Multiple System Atrophy and related neurodegenerative disorders were invited to the 1st MSA Global Advocacy Meeting to be held in conjunction with the MSA Congress. The goal of this meeting is to bring together MSA and related charities to discuss key activities and challenges, and to develop coordinated plans for advancing the mission to support the MSA patient community.

The MSA Coalition is pleased to welcome these charity participants: MSA Trust (UK), MSA-AMS (Belgium), and U.S charites MSA NJ, Defeat MSA, the MSA Shoe, Cure MSA, the Rex Griswold Foundation, Blandford-Rees Foundation, Move Over MSA, the Cleveland Clinic Lou Ruvo Center for Brain Health, CurePSP, the Michael J. Fox Foundation, and the National Organization for Rare Disorders.

“MSA Trust is looking forward to a meeting of minds at the International MSA Congress and Global Advocacy Meeting,” said Karen Walker, Chief Executive of the MSA Trust. “We will renew our commitment to work collaboratively with our colleagues to develop shared goals for the advancement of knowledge around understanding MSA and supporting those living with MSA, their families, and care partners.”

The Global Advocacy Meeting agenda will include a presentation by Debbie Drell, Director of Membership, National Organization for Rare Disorders, who will speak about collaboration models and engaging stakeholders. Jamie Eberling, Ph.D., Director of Research Programs at the Michael J. Fox Foundation for Parkinson’s Research, will share best practices in developing research programs.

“The National Organization for Rare Disorders (NORD) supports the 6th International MSA Congress and 1st Global MSA Advocacy Meeting during this historic time for the multiple system atrophy community. This year, NORD celebrates 35 years as a hub and resource for rare disease advocacy organizations and will bring the experience of these decades to the advocacy meeting,” said Debbie Drell, NORD Director of Membership. “I’m proud to speak and support the dozens of organizations around the world who are present at this meeting, for a stronger and more unified MSA network.”

The MSA Coalition continues to provide leadership and funding for global efforts to defeat MSA. Over the past 4 years, it has awarded $1.6 million to fund 36 research grants aimed at identifying diagnostic biomarkers and potential treatments. The Coalition has sponsored a past International MSA Congress, the American Autonomic Society Congress, and the European Federation of Autonomic Societies Congress, and has awarded travel grants to many young MSA investigators.

“The MSA Coalition believes it is critically important to support and collaborate on global efforts that can improve the outcomes for multiple system atrophy patients,” said Cyndi Roemer, MSA Coalition Chairperson. “We also are very excited to be hosting the 1st Global MSA Advocacy Meeting, bringing together MSA charities from around the nation and the world to collaborate on ways to best meet our shared goals to help MSA families through research, education, support services and increased awareness,” Roemer added.

“Our Global MSA Research Grant Program has injected new life into research efforts for MSA. Sponsoring the International MSA Congress and bringing so many amazing, dedicated researchers and advocates together helps to fuel enthusiasm and new ideas on how to collaborate which will speed progress towards improved treatments and hopefully a cure. Much of our revenue comes from grass-roots fundraisers, so these collaborative efforts are truly enabled by the patients themselves. The MSA community can be very proud of this sponsorship and it is a wonderful way to kick off MSA Awareness Month.”

During MSA Awareness Month in March, the MSA Coalition and other MSA charities will be conducting many awareness initiatives, including a nationwide campaign to have all US states declare March Multiple System Atrophy Awareness Month. Additionally, the MSA Coalition will be ringing the closing bell of the New York Stock Exchange on March 5, an event which will receive excellent media coverage and will be shared via NYSE social media channels, including Facebook, Twitter, and Instagram.



Award based on Outstanding Online Reviews

Charlotte, NC –The Multiple System Atrophy Coalition announced today it has been named a “2018 Top-Rated Nonprofit” by GreatNonprofits, the leading provider of user reviews of charities and nonprofits.

The MSA Coalition provides important services and programs to people around the world affected by Multiple System Atrophy, a rare and terminal neurodegenerative disorder striking in the middle years of life. People with MSA are often initially misdiagnosed as having Parkinson’s disease, but the rare disorder progresses much faster and affects multiple parts of the body’s neurological systems. Over the past 4 years, the MSA Coalition has funded 36 research grants totaling more than $1.6 million, resulting in greater understanding of the disorder and providing new hope and optimism to the MSA research community. No other MSA charity has funded research to this extent on a global basis.

“We are honored to be named a 2018 Top-Rated Nonprofit,” says [Cyndi Roemer, Board Chair, The MSA Coalition. “We are proud of our accomplishments this year, including our primary sponsorship of the 6th International MSA Congress, hosting the first-ever Global MSA Advocacy meeting, hosting our biggest annual patient and family conference, along with our continued dedication to encouraging and funding meaningful research. Importantly, the MSA community, those impacted by this horrible disease are recognizing our efforts with great reviews. As an all-volunteer run organization these positive reviews are greatly appreciated”

The Top-Rated Nonprofit Award is the based on the rating and number of reviews that the MSA Coalition received from volunteers, donors and aid recipients. “We found that The Multiple System Atrophy Coalition organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their organization is one of the first places that I go looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My Family and Friends thank all of the dedicated volunteers;” wrote Tom T., a n MSA caregiver.

“The Multiple System Atrophy Coalition is a great example of a nonprofit making a real difference for their community,” said Perla Ni, CEO of GreatNonprofits, “Their award is well-deserved recognition not only of their work, but the tremendous support they receive, as shown by the many outstanding reviews they have received from people who have direct experience working with the MSA Coalition.”

GreatNonprofits is the leading website where people share stories about their personal experiences on more than 1.6 million charities and nonprofits. The GreatNonprofits Top-Rated Awards are the only awards for nonprofits determined by those who have direct experience with the charities – as donors, volunteers and recipients of aid.

The complete list of 2018 Top Rated Nonprofits can be found at:

About GreatNonprofits

GreatNonprofits is the leading site for donors and volunteers to find stories and ratings of nonprofits. Stories on the site influence 30 million donation decisions a year. Visit www.greatnonprofits.orgfor more information.