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MSA Coalition Highlights For 2018

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.

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.




Dr. Sandrine Wauters, PhD researching multiple system atrophy

Dr. Sandrine Wauters, PhD

A Guest Blog Post Written by Dr. Sandrine Wauters, PhD

Salerno, Italy, April 22-23, 2016

Attending the Salerno 5th International Congress on Multiple System Atrophy was very beneficial to my multiple system atrophy research in many ways.

Firstly, by allowing me to present my poster of recent unpublished data I collected while being funded by the MSA Trust for the past 18 months. I was able to talk to different scientists about the caveats of certain results which gave me more ideas in how to structure the paper and future experiments.

Secondly, those who were expert in mitochondrial dysfunction gave me some guidance in how to interpret certain data which they have replicated independently. This has given me confidence in the technique I used and how to understand what the results signify in the field.

Thirdly, certain talks presented at the congress mentioned the impact of the Mitsui. J et al., (2013) paper which I referenced in my poster and which sparked my project. This showed how scientists in this field are all focusing on similar aspects of MSA pathogenesis which confirms its importance and can spark new collaborations.

Dr. Sonja Scholz from the USA shared the genetic advances in MSA in reference to a Genome Wide Association Study (GWAS) where genes linked to different cellular processes were mentioned, ranging from lipid metabolism to vasoconstriction. My knowledge of MSA registries was significantly expanded after hearing talks from scientists across the world. These registries are beneficial to research and clearly involve a lot of organisation and dedication.

I was also able to put a face to the name of many neuroscientists whose research I have read about or those who my colleagues collaborate with. I find that introducing yourself to fellow researchers can start strong collaborations and support networks. This also was a key theme of the congress – team work – and everyone sharing and supporting each other. We all have the same ultimate goal of finding a treatment or even a cure for MSA.

Hearing from Jill Lyons, an MSA nurse specialist in the UK was very touching as sometimes as a research scientist you can become so focused on your project aims that it is invaluable to be reminded that we have a whole team of people who work towards our mutual goal. This sense of community was a very powerful take home message from this congress.

I would like to take this opportunity to thank the MSA Coalition for sponsoring the 5th International MSA Congress and awarding me a young investigator travel grant so that I might present my research poster. I am honoured and privileged. I was also very happy to see Pam Bower again at the congress and to update her on my research. We would not be able to do our research and make a difference without the MSA Coalition’s continued and invaluable support.

About the Author:

Dr. Sandrine Wauters, PhD, currently works at the Queen Square Brain Bank, University College London (UCL) as a Senior Research Technician under supervision of Professor Janice Holton and collaboration with Professor Henry Houlden (UCL) and Dr Iain Hargreaves (UCL).
She has received funding for her MSA research from the MSA Trust (UK) and from the King Baudouin Foundation. Her research poster presented at the 5th International MSA Congress was entitled “Mitochondrial dysfunction in multiple system atrophy” by Wauters SC, Kiely A, Houlden H, Hargreaves I and Holton JL – UCL Institute of Neurology, Queen Square Brain Bank for Neurological Disorders and UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery