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Sao Bettencourt’s MSA Coalition Travel Award Report

Sao Bettencourt’s MSA Coalition Travel Award Report

Written By Sao Bettencourt – MSA Coalition Travel Award Winner

Thanks to the support of MSA Coalition, I have attended in September (1-4th) the “Synuclein Meeting 2019: Where we are and where we need to go” in Ofir, a city in the outskirts of Porto, Portugal.

This meeting brought together over 300 participants, including leading experts in the field of Synuclein and Synucleinopathies, from both academia and industry, as well as a broad community of junior scientists. This meeting was organized in an unusual format, consisting mostly of round-table discussions, with just a few oral presentations and keynote lectures, to create more opportunities to discuss the major questions in the field. There were also two poster sessions (over 130 posters in total), during which I have presented a poster with our recent research findings on MSA (summarize below).

Attending this meeting was beneficial for me and our research group at several levels:

  1. Being able to disseminate and discuss our exciting findings on epigenetics of MSA;
  2. Having the chance to hear from leading experts, learn extensively and update my knowledge about
    ongoing research on Synuclein and Synucleinopathies (including MSA);
  3. Having the chance to meet personally and engage with both senior and junior scientists in the field,
    and discuss science as well as career development;
  4. Having the chance to network with researchers I have met/worked with before as well as with
    potentially new collaborators.

During the conference, MSA was given relevant attention in multiple occasions:

On the first day of the conference, there was a main talk by Gregor Wenning, who gave an overview about MSA, from clinical aspects to highlighting several recent studies trying to develop drugs that can then be taken into clinical trials. He mentioned that at least 25 compounds are already being or about to be tested in MSA.

MSA was also given major attention on “Roundtable 10 – Spreading of alpha-synuclein – relevant or epiphenomenon?”, chaired by Glenda Halliday and having Jiayi Li, Jeff Kordower, Donato Di Monte, Glenda Halliday, Veerle Baekelandt, and Gregor Wenning as speakers. The major discussion point was whether in Synucleinopathies the spreading of alpha-synuclein occurs in a prion-like manner. There was no overall consensus in this matter.

There were also about 15 posters mentioning MSA, some of which having MSA as the main research focus while others would use MSA as a comparison group together with other neurodegenerative diseases. From those, I would like to highlight our own poster:

PO42 – by Conceição Bettencourt et al. (United Kingdom), “DNA METHYLOME ANALYSIS IN POST-MORTEM BRAIN TISSUE OF MULTIPLE SYSTEM ATROPHY PATIENTS”. In the poster we have presented our recent findings on epigenetics of MSA. Despite extensive research, the regional vulnerability of the brain to MSA pathology remains poorly understood. Genetic, epigenetic and environmental factors have been proposed to explain which brain regions are affected by MSA, and to what extent. We explored for the first time epigenetic changes in post-mortem brain tissue from MSA cases. We conducted a multi-phase case-control study, and profiled genome-wide DNA methylation (Illumina EPIC arrays) in white mater from three brain regions characterized by severe-to-mild pathology burden in the MSA mixed subtype (cerebellum, frontal lobe and occipital lobe). We observed that DNA methylation levels in HIP1, LMAN2, MOBP, among other loci were perturbed in MSA mixed subtype, and also to variable degrees in the other pathological subtypes (MSA OPCA and SND). We also identified several molecular signatures significantly associated with MSA (disease status and pathological subtypes), and with neurodegeneration in the cerebellum. Importantly, the

DNA methylation signature having the strongest association with MSA included SNCA, the gene encoding α- synuclein. Altogether, our results provide the first evidence for DNA methylation changes contributing to the molecular processes altered in MSA, and highlight potential novel routes for diagnosis and therapeutic interventions.

I would also like to highlight several examples of excellent research done by others, including:

PO09 – by Antonio Heras-Garvin et al. (Austria), “HYPOXIA, A POSSIBLE PATHOGENIC FACTOR IN MSA AND PD”, investigating a possible role for hypoxia as a pathogenic factor in MSA and PD. The authors observed a significant accumulation of the hypoxic marker HIF2α in MSA and are pursuing this further with additional investigations.

PO17 – by Miguel Lemos et al. (Austria), “COMBINED ANTI-Α-SYNUCLEIN THERAPY FOR DISEASE MODIFICATION IN MULTIPLE SYSTEM ATROPHY” testing disease modification properties of two compounds in a transgenic mouse model overexpressing α-Synuclein in oligodendrocytes. One of these compounds consist of short immunogenic peptides (AFFITOPEs), carrying a sequence that mimics the original α- Synuclein epitope, and the other (Anle138b) is an aggregation inhibitor. The authors confirmed the efficacy of the single therapy with AFFITOPEs or Anle138b, observing motor improvement, rescue of dopaminergic neurons, reduction in α-Synuclein oligomers, decrease of GCIs density, and decreased levels of microglia activation. The combination of Anle138b+AFFITOPEs has also shown benefits but no cumulative beneficial effects were achieved by combining the two. Interesting results in this mouse model that certainly warrant further investigation.

PO35 – by Violetta Refolo et al. (Austria), “NEUROINFLAMMATORY PATHWAYS INVOLVED IN THE SELECTIVE NEURODEGENERATION OBSERVED IN A TRANSGENIC MOUSE MODEL OF MULTIPLE SYSTEM ATROPHY”, investigating the pathways involved in the neuroinflammatory region-specific events occurring, over the disease course, in a transgenic mouse model of MSA. Their findings suggest an important role of the early, alpha-synuclein-triggered neuroinflammation for the progressive neurodegeneration of the substantia nigra in this mouse model.

PO44 – by Jonas Folke et al. (Denmark), “PERIPHERAL IMMUNE CELLS CORRELATE TO DISEASE PROGRESSION IN MULTIPLE SYSTEM ATROPHY AND PARKINSON’S DISEASE”, evaluating peripheral immune cell changes in MSA and PD in a longitudinal manner, and showing changes in immune cells in both MSA and PD patients.

PO75 – by Vincenzo Donadio et al. (Italy), “INTRANEURAL SKIN NERVE Α-SYNUCLEIN DEPOSITS IN MULTIPLE SYSTEM ATROPHY”, who reports that neuritic inclusions of phosphorylated α-synuclein in somatic skin nerves can represent a sensitive biomarker for MSA.

PO116 – by Teresa Torre-Muruzabal et al. (Belgium), “CHARACTERIZATION OF TWO DISTINCT ALPHA- SYNUCLEIN STRAINS IN A MOUSE MODEL FOR MULTIPLE SYSTEM ATROPHY”, examining whether different α-synuclein strains might exert distinct pathologies in an animal model of MSA. They found distinct histopathological and behavioural phenotypes in vivo.

PO118 – by Ilaria Poggiolini et al. (United Kingdom), “DEVELOPMENT OF ALPHA-SYNUCLEIN SEEDING ASSAY AS AN EARLY, PROGRESSION AND STRATIFYING BIOMARKER FOR SYNUCLEINOPATHIES”, examining aSyn RT-QuIC assay in brain tissue from Multiple System Atrophy (MSA) in parallel to PD patients in order to see if it can stratify between the different synucleinopathies. The authors found substantially different kinetic properties on RT-QuIC in MSA vs. PD, and suggest the aSyn RT-QuIC assay has potential as an early, differential test for prodromal disease.

10 Evaluation Criteria for Selecting a Nonprofit to Support

10 Evaluation Criteria for Selecting a Nonprofit to Support

Are you looking to evaluate which multiple system atrophy (MSA) nonprofit to support with your donation or fundraiser? Even for such a rare disease, you do have choices. Our goal with this blog post is not to instruct you to donate to the MSA Coalition. Rather, we are going to answer the 10 evaluation criteria suggested by the American Endowment Foundation. We encourage you to contact us if you have any questions. We also encourage you to ask these same questions of any other MSA nonprofits you are evaluating. By understanding each MSA charity’s mission, goals, governance, programs, and accomplishments, you can best put your MSA designated funds to work in a manner that suits your desires.

Ten Criteria for Evaluating MSA Nonprofits

1. Look at the charity’s mission and determine if this is important to the donor.

The Multiple System Atrophy Coalition is a 501(c)(3) charitable organization founded in 1989. It has a 30-year history of devotion to improving the quality of life and building hope for people affected by MSA. The MSA Coalition developed its four-pillar mission in 2011:

  • 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.

2. Look at the outcomes. For instance, how many people has the organization helped, and has that increased or decreased over time? Given the size and budget, is that number reasonable?

Due to the nature of rare disease it is difficult to pinpoint how many people the MSA Coalition has helped. The MSA Coalition has more than 20,000 followers on Facebook and 10,000 e-newsletter subscribers. Additionally, more than 20,000 people visit the MSA Coalition website each month. Of great importance, the MSA Coalition hosts an annual patient and care partner conference, educating families about MSA and providing an opportunity to connect with others living with this disease. More than 230 people attended the 2019 conference in person and and over 3,000 people have watched the virtual educational videos from that conference. In fact, the MSA Coalition has been live streaming its conference since 2013 with thousands of online viewers each year. A big part of our mission is providing a trusted sense of community for those affected by MSA. We believe our programs are effectively reaching the MSA community.

Another major part of our budget is multiple system atrophy research funding. Over the past few years, the MSA Coalition has Dr, Gregor Wenning's Multiple System Atrophy Research Labpartnered with the National Institutes of Health to fund the Global MSA Registry (GLOMSAR). GLOMSAR collects data for a natural history study and enables patients to be readily available for upcoming MSA clinical trials. Additionally, the MSA Coalition Research Grant Program has funded 40 research grants to date. There are 20 published peer-reviewed articles that have arisen from our research grants so far and many have been presented at scientific conferences. While it is too early to measure, the hope is that these and future funded studies will begin to positively impact the medical outcomes of those with MSA.

3. Review the financial information. Is it transparent and recent? Are the expenses in line with the budget? Has the budget increased or decreased in recent years? If applicable, how has the organization adjusted to a decrease in government funding? Look through the current Tax Form 990 and also verify its tax-exempt status.

The MSA Coalition publishes all of its annual Tax Form 990s. We encourage all interested supporters to carefully review these documents and to contact our treasurer, Carol Langer, with any questions.

While the MSA Coalition has not been directly impacted by reductions in government funding, rare diseases including MSA cannot count on the government to sufficiently fund much-needed research. As such, grassroots fundraising is a critical component to ensuring that MSA research continues to be funded. Since 2013, the MSA Coalition has funded 40 research grants totaling more than $2 million at 29 renowned MSA research institutions around the world. Additionally, in 2019, the MSA Coalition launched a parallel research grant program focused on larger grants that foster international research collaboration targeting genetic and environmental causes of MSA, biomarkers for earlier diagnosis, and treatments.

A sustainable and increasing revenue stream will ensure that the MSA Coalition can continue to fund important research as recommended by its Scientific Advisory Board.

Verify the MSA Coalition’s tax-exempt status. Please use our Tax ID number, 74-2926378 to search.”


4. Talk or meet with the organization’s leadership if the donation is significant enough. Has there been much turnover of key staff members? How can the donation be best utilized? Who will be the primary contact person for the donor?

We encourage any donor to call and ask questions about The MSA Coalition. The all-volunteer board of the MSA Coalition has had very low turnover. We encourage donors to earmark donations “as needed,” however donors can also restrict funds to “research” or “education.” Please call the MSA Coalition at (866) 737-4999 to be connected with the right volunteer to discuss your questions.

5. Identify who is on the Board of Directors. Are there many or few board members? Are they business or community leaders? Especially if a donor is considering joining a board, she or he should meet with some board members.

The MSA Coalition Board of Directors is 13 members strong. Most board members have a strong personal tie to multiple system atrophy, having lost a loved-one to the disorder. The MSA Coalition also has an active MSA patient representative as well as a MSA caregiver representative on the Board. There are board members with medical and doctoral degrees, IT, business and financial backgrounds, educators, business executives, and journalists.

6. Evaluate the main supporters. Are there many funders or few? Have key funders been involved for some time? Does the donor know any supporters?

While the MSA Coalition receives the majority of our revenue from grass-roots fundraising within the MSA community, it does have large donors and several corporate sponsors. As an example of our large fundraising base, in 2017 over 1,800 donors participated in our year-end giving campaign on CrowdRise. The MSA Coalition has received grants from Lundbeck USA to support the past several annual MSA Coalition Patient & Family Conferences. Other grants have been received from Biohaven, Biogen and AstraZeneca. These organizations and individuals also have provided funds to support the MSA Coalition Research Grant Program: MSA Trust, Cure PSP, MSA NJ, Move Over MSA, the Rex Griswold Foundation, Patrick Costigan, and the Blandford-Rees Foundation.

7. Discuss with the leadership how the donor can be most helpful in addition to financial contributions.

The board members of the MSA Coalition will be happy to discuss your interest in volunteering your time. Please visit our Contact Us page and visit our Board of Directors page to learn more about each volunteer board member.

8. Visit the organization if possible or volunteer to really get to know the people and quality of the work.

As a virtual organization run by volunteers, the MSA Coalition does not currently have offices you can visit. However, an excellent opportunity to volunteer and meet our Board of Directors is at our annual Patient & Family Conference. This conference is the world’s largest get-together of MSA patients, their families, volunteers, other MSA charities, companies, healthcare professionals, and MSA researchers. It is an excellent place to evaluate and see first-hand the work being done.

To get a sense of our annual conference format, view our recorded MSA annual conference sessions, which were also live streamed. Of course, our board members are always just a call or email away if you want to communicate with us!

9. Determine that the organization has a very good reputation.

Our long-standing, highest-level ratings with GuideStar, and Great Nonprofits help validate our reputation as a trusted and credible MSA nonprofit. Additionally, begining in 2029, the MSA Coalition received a perfect rating from CharityNavigator, one of the most trusted charity watchdogs in the industry and is the only MSA charity to be covered by them. More importantly, our credible patient/care partner support services and regular educational programming provide those affected by MSA with an important sense of community and the tools to better advocate for their health.

The MSA Coalition’s renowned Scientific Advisory Board and MSA Research Grant Program continuously receive praise from the research community and scientific conferences for the work we are doing. At the American Autonomic Society Scientific Sessions, presenters continue to acknowledged the MSA Coalition for funding that is leading to important breakthroughs. Dr. David Robertson has praised our research grant application and review process as being as sound as that of NIH.

As a testimony to our reputation, the MSA Coalition is the only multiple system atrophy charity to have invited representatives on the Coalition of Patient Advocacy Groups (CPAG) and Rare Disease Clinical Research Network – Autonomic Disorders Consortium (RDCRN-ADC) at the NIH. This important alliance has successfully secured governmental research grants for MSA, including funding for the Global MSA Registry (GLOMSAR).

The MSA Coalition’s research funding is acknowledged in many published scientific peer-reviewed articles. We have sponsored travel grants for more than 30 young investigators who’ve presented their MSA work at prestigious scientific conferences such as the International Parkinson’s Disease and Movement Disorder Society Congress, the American Autonomic Society Congress, the International Congress on Multiple System Atrophy, and the Society for Neuroscience. Additionally, the MSA Coalition has more than 800 researchers and healthcare professionals who have opted into our research and healthcare provider database to stay abreast of opportunities to apply for research grants and young investigator travel awards.

The MSA Coalition works collaboratively with other MSA and related organizations. In 2018, we organized and hosted the 1st Global MSA Global Advocacy Meeting Hosted by MSA Coalition March 2018MSA Advocacy Meeting, bringing together MSA organization leaders from around the nation and the world and established the Global MSA Advocacy Consortium. 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 following nonprofits and foundations were invited attendees: MSA Trust (UK), MSA-AMS (Belgium), 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 NORD.

The MSA Coalition also encourages all charities, foundations, and large individual donors to partner with the MSA Coalition’s Research Grant Program. This partnership helps ensure synergy with limited research monies and access to expert scored research grant applications. The following groups 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.

10. Feel confident that contributions and efforts will be appreciated and utilized effectively and efficiently.

The MSA Coalition is overseen by a dedicated all-volunteer Board of Directors. Begining in June of 2020 the MSA Coalition enered a partnership with MCI USA to provide full time staff to the MSA Coalition. The MSA Coalition has always sent acknowledgements to donors and recognized fundraisers in its monthly newsletter and social media. Now with full time staff, including an executive director, the charity is striving to improve outreach to its constituents.

The MSA Coalition places a great deal of pride and emphasis on transparent governance and financial reporting. In addition to our audited financial reports mentioned above our Board of Directors sign ethics and conflict-of-interest statements each year. Through our 13-member independent Board of Directors, our Scientific Advisory Board, and our new Medical Advisory Board, we follow a system of checks and balances to ensure no one person has undue influence over important decisions. Additionally, our newly formed General Advisory Council involves experts and volunteers in a variety of professions to assist with our work to ensure we are doing the best job possible in building and implementing our programs.

As you evaluate the MSA Coalition, you will see low operating costs and a track record of funding meaningful programs designed to enhance quality of life, while collaboratively building hope for those living with multiple system atrophy.

10 Evaluation Criteria for Selecting a Nonprofit to Support

MSA Coalition Highlights For 2018

While 2018 isn’t over, The MSA Coalition has already had a banner year! Here are a few of our key accomplishments and highlights.

The 2018 MSA Patient & Family Conference

Our annual patient and family conference was held in San Francisco in September. Over 150 people participated in person and thousands more tuned in for our livestream webcast. All of the presentations and Q&A discussions with medical professionals were very informative. If you missed it, videos of the event are still available at our web archive:

2018 MSA Patient and Family Conference Video Archive

MSA Coalition Funded Research Now Being Published

With your help, we have funded over $1.6 Million in research grants since 2013. We are very excited to report that some of these projects are now yielding important results. One great example of our research dollars at work is this biomarker project at UCLA which has made progress towards developing a simple blood test that may be able to diagnose MSA sooner and more accurately. This would help to greatly speed up and improve clinical trials as well as rule in or out the diagnosis for many families who are uncertain. More studies are still needed to validate the findings before this test could be made available:

Blood Biomarker Distinguishes Parkinson’s from MSA

The MSA Coalition Actively Supported Global Research and Advocacy Efforts

Earlier this year, we sponsored and attended the 6th International MSA Congress for researchers and clinicians. Additionally, we organized and hosted the first ever Global MSA Advocacy Meeting which was held in conjunction with the MSA Congress. In total over a dozen advocates representing MSA organizations from around the US and Europe participated in the collaborative advocacy meeting:

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

The MSA Coalition’s Volunteer Work Is Building Hope For Those Living with MSA

Our participation at international conferences such as this has enabled us to make important connections with clinicians, researchers and pharmaceutical companies who are working towards bringing new therapies to those with MSA. Developing closer relationships enables us to act as the bridge between pharmaceuticals, researchers and patients, getting the word out about new clinical trial opportunities, and helping families recognize the vital importance of their participation. There is hope on the horizon!

First volunteers dosed in Phase I clinical trial of PBT434, Prana’s lead therapy for parkinsonian diseases

The MSA Coalition Builds Awareness For Our Rare Disease

From local and national government MSA awareness proclamations to ringing the New York Stock Exchange Closing Bell, the MSA Coalition provides leadership and support as we all try to build awareness for MSA, a rare disease affecting thousands of people around the world. But, did you know, the single most impactful way to raise awareness is for you to create a fundraiser for our cause. When people donate to The MSA Coalition because of your fundraiser that makes them an active supporter of the multiple system atrophy cause.


Our Most Important 2018 Accomplishment Will Occur Between November 27 (Giving Tuesday) and December 31! We Need Your Help To Make It Happen!

There is still much work to be done and we now look towards 2019. To enable us to continue to fund research, to sponsor educational conferences, to provide trusted emotional support for families through our dedicated help line and facebook forums, and to build hope for the MSA community, once again we are asking you to partner with us on this journey. Our goal is to raise $800,000 this Holiday Giving Season. Everybody needs to chip in to make it happen. The MSA Coalition will provide detailed directions on how to maximize matching dollars. Stay connected with us and help us reach our goals. We can’t do it without you.

Sign Up For The “Holiday Hope For MSA” Campaign on Crowdrise Today!

Fundraising Will Begin on Giving Tuesday, November 27th.

Caution When It Comes To Stem Cells For MSA

Caution When It Comes To Stem Cells For MSA

Updated: April 30, 2020

While it is understandable that many MSA patients may want to try anything possible, stem cell treatments for neurodegenerative diseases are still highly experimental and The MSA Coalition cannot recommend them at this time. In fact, our scientific advisors who are expert in MSA do not recommend trying stem cells outside of a scientific protocol. This means that clinics around the globe that charge exorbitant amounts of money for “stem cell cures” are to be avoided. The vast majority of these clinics are not doing scientific studies.

How can you recognize a scientific study? Here are some questions to ask:

1. Does the clinic employ standard measures to record patient symptoms and changes in function before and after the treatment? Several standardized scales exist that would be very easy to apply, including the Unified MSA Rating Scale (UMSARS) and the Unified Parkinson’s Disease Rating Scale (UPDRS).

If no standard rating scale measurements are being done before and after treatment, this is a red flag.

2. Has the research been published in reputable peer reviewed scientific journals? Legitimate researchers welcome others to review and build upon their work.

If their work is not being published, this is a red flag.

3. Does the clinic charge an exorbitant amount of money to be involved in the trial? Usually clinical trials do not charge any money for patients to be involved and they may even pay for the patient and a caregiver to travel to the study or reimburse their out of pocket costs.

If the clinic is charging a large amount of money to be involved, this is a red flag.

Be An Informed Patient

Please be an informed consumer when you are exploring claims from companies offering stem cells, either overseas or in the USA. Check out this comprehensive information from the FDA that gives all the facts and guidelines on what questions to ask to help ensure you are making an informed choice.


Recognized scientific research

There are a handful of legitimate scientific research studies on mesenchymal stem cells (MSC) in MSA that we are currently aware of. Please refer to the MSA Coalition’s MSA Treatment Pipeline page for more information.

Want More Great Multiple System Atrophy Information?

Read all about the MSA Coalition’s mission and find links to our programs and educational resources.

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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!