Building Hope for Multiple System Atrophy

by MSA Coalition | Mar 26, 2018 | MSA-Blog

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 (MultipleSystemAtrophy.org) 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.

To 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!