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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