Multiple System Atrophy Awareness

Spreading awareness worldwide


Latest Research News  – Please see more MSA research news here


“Ray of hope” … Professor Gregor Wenning (MSA Coalition Scientific Advisor – below center) has a major role in the new project MultISyn – “Multimodal Imaging of rare Synucleinopathies”. 500,000 Euros were recently awarded by the European Union to his Neurobiology Division at the Medical University of Innsbruck to develop and assess a new PET scan tracer to improve the imaging of alpha-synuclein deposits in patients and thus increase the understanding of Parkinson’s disease and Multiple System Atrophy. The MultISyn project overlaps with the SYMPATH project in that this new imaging method can be used to check whether new therapeutics such as the AFFiRiS vaccine are making an impact.

This article in German is titled “Ray of hope for Parkinson molecular imaging

MultISyn – “multimodal imaging of rare Synucleinopathies’ is a new EU project , which is funded with a total of six million euro since late last year and is on the development and assessment of a new tracer to improve the imaging and thus the understanding of Parkinson’s disease . Prof. Gregor Wenning from the Department of Neurology (Director: Univ.-Prof. Werner Poewe) is heavily involved in the co-ordinated research projects with Tübingen.

Parkinson’s disease is the second most common neurodegenerative disease in Europe after Alzheimer’s dementia. In Austria currently around 16,000 to 30,000 people are living with a Parkinson’s syndrome. The slowly progressive disease of the central nervous system leads to disturbance of movement and often leads to depression. Imaging techniques play a key role in the early diagnosis of the disease, can aid research into their exact cause and be used to develop preventive therapy strategies. “We now know that the deposits in the brains of Parkinson’s patients – mostly consist of so-called Lewy bodies – the protein Alpha-Synuclein. So far, it has not been possible to detect these aggregates and their progression by means of imaging techniques. The EU project MultiSyn aims now, to allow molecular imaging for Parkinson’s disease and to close the gap with Alzheimer’s imaging”, emphasizes Univ.-Prof. Gregor Wenning, head of the Department of Neurobiology, one of eight MultISyn partners.

Search for traces in the brain

Prof. Thomas Gasser, a geneticist at the Hertie Institute for Clinical Brain Research, University Hospital Tübingen is now coordinating the development of a tracer which is able to bind to the protein alpha-synuclein and make the deposits visible. A tracer is a radioactively labelled molecule that is injected and binds in the brain to certain proteins and can be detected by the emitted radiation by means of Positron Emission Tomography (PET). “Two related synucleinopathies – Parkinson’s disease, in which the gene for alpha-synuclein is mutated and multiple system atrophy (MSA ) – a variant of the disease will be studied. Both diseases are particularly aggressive and offer better visibility of the imaging protein deposits when studied together, which is why they offer special potential for new knowledge”, the designated MSA expert Gregor Wenning explained.

Innsbruck neurobiology as a test stage

Finally, the newly developed tracer in the framework of the project will also be used to check two therapeutic approaches. These investigations will take place under the supervision of Prof. Wenning in Innsbruck. “One approach is based on the protein aggregation inhibitor “ANLE 138b”, a second on active immunization, to stimulate the formation of antibodies that help absorb Alpha-Synuclein, in the body”, Prof. Wenning reported. The effect of therapeutic approaches could be seen on PET scan with the tracer.

The Multisyn project is funded by the 7th EU Framework Programme with a total of six million euros , of which over 500,000 euros will go to the neurobiological department of Prof. Wenning. Eight research centres and companies from six countries are involved with leading researchers on the development of tracers, for evaluation of PET/MRI images, as well as for the experimental and clinical research.

Neuroscience research

Neurodegenerative diseases such as Alzheimer’s, Parkinson’s disease, multiple system atrophy, and anxiety disorders are subject of intense research in the framework of the neuro-scientific focus of the Medical University of Innsbruck and the University cross-specialist research area for the study of chronic diseases of the central nervous system (SFB-F44) at the site of Innsbruck. Around the world, as well as at the Innsbruck University Clinic of Neurology, researchers try to identify specific markers for a possible early diagnosis of Parkinson’s syndrome, so to slow the progression of the neurological disease. Under the direction of Prof. Poewe, the researchers of the Innsbruck Neurology in numerous international, multi-center, clinical and epidemiological projects, as well as drug trials are involved.


RESEARCH UPDATE: Word from Europe is that there will be a Phase I safety trial of the proposed MSA vaccine (from drug company AFFiRiS) in 30 MSA patients in France starting in September 2014. It will take at least one year before results are known. If the safety trial is positive then a larger Phase II trial would be the next step. Only French patients can participate in the safety trial. It’s too soon to say whether a Phase II trial would include patients outside of Europe


Vaccine to be developed and tested for Parkinson’s Disease and Multiple System Atrophy

VIENNA, April 28, 2014 /PRNewswire/ –
An international consortium of top European research teams has received significant EU funding for the development of therapeutic vaccines against Parkinson’s Disease (PD) and Multiple System Atrophy (MSA). Led by the Austrian biotech company AFFiRiS AG, the consortium will use a novel tandem strategy to advance the development of two therapeutic vaccine candidates in parallel. They are both unique in the potential for disease modification, something which is sorely missing in PD as well as in MSA. Both candidates target a protein called alpha-synuclein, which plays a key role in the onset and progression of PD and MSA. Additionally, the group attempts to identify biomarkers with diagnostic and prognostic value. Altogether, the consortium exerts medical and scientific key opinion leaders from Germany, France and Austria. The project SYMPATH has been awarded € 6 Mio. from the 7th Framework Program of the EU and will run for 48 months.

Read more here:—top-experts-unite-in-european-consortium-256973531.html


Global MSA Research Roadmap Meeting Planned for November in Las Vegas

Kerry Simon’s Fight MSA organization is sponsoring a major MSA research Symposium to be held in Las Vegas in November.

Title: Global MSA Research Roadmap Meeting

MSA research experts from around the world are being invited to participate.


• To develop a roadmap for MSA-related research that will provide the framework for therapeutic development from:

o Expanded understanding of molecular pathogenesis

o Expanded preclinical modeling

o Expanded experimental therapeutic targeting of pathologic development and spread

o Expanded understanding of divergence of synucleinopathy v. Parkinson’s Disease

o Expanded understanding of disease phenotypes and outcome measures, including global registry

o Expanded disease-onset, disease-progression, and therapeutic-response biomarkers

o Expanded experimental therapeutic development

• To identify critical needs/barriers to advance MSA research

• To acquaint funding agencies with the need to devote funds to MSA

• To further global coalitions and collaborative efforts to advance research in MSA

• To further attract pharm and biotech to MSA as an area of therapeutic interest and development

o Including as a model disease for neurodegenerative therapeutic development, with potential for broadly applicable outcome markers and therapeutics given MSA’s rapid progression and diffuse symptomatology

o Including the commonality of synuclein between MSA and PD as integral to disease pathology

• To elevate awareness of MSA through publicity, publications surrounding this meeting, and engagement of existing stakeholders for MSA advocacy


• Global MSA Research Roadmap

• Publication of overall white paper on Roadmap

o Potential for development of segmented publications with increased granularity per Working Group as well

• Identification and rank-ordering of critical next steps in MSA research per working group

o Embed within overall Roadmap

o Identify time to re-convene to review progress/obstacles

• Identify metrics to track progress of/obstacles to Roadmap execution


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MSA 101: Basic MSA information to know

For a very good overview of MSA please watch the video presentation by Dr. Kathleen Poston

For the newly diagnosed or those still seeking a diagnosis these articles should be read and shared with your doctors.

1. Top 10 things to know about Multiple System Atrophy.  Written with input from the collective experiences of MSA patients and caregivers who have participated in the online shydrager Yahoo support group since 1995.  This list touches on many things not normally highlighted in medical literature about MSA.

2.  Second Consensus Statement on the Diagnosis of Multiple System  Atrophy.  This was written in 2007 by a group of the world’s expert clinicians and researchers.  This is the correct and most up to date definition of Multiple System Atrophy… accept no other!

3.  A brief review of Multiple System Atrophy by Professor Niall Quinn.  This was written in 2012 by one of the world’s leading experts on the disease.

4. I nicknamed this article “The MSA Bible” because of it’s length and in depth description of MSA, it includes a very good description  of treatment options available for many of the most troubling symptoms. Unlike the bible this article is updated regularly as new information is discovered about MSA.

5. Progressive Late-Onset Cerebellar Ataxia.  Very good review of all tests that are available to rule out various causes of cerebellar ataxia. “In patients over the age of 50, a rapidly progressive disease course should prompt reevaluation for Multiple System Atrophy”.


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Cyclists to Ride from Chicago to Washington, D.C., to Raise Awareness for MSA and Funds for The Multiple System Atrophy Coalition

Riders will ‘Make Their Mark’ to salute their father and brother, who died from Multiple System Atrophy, a rare and terminal neurodegenerative disease.

If you can help out with sponsorship or to volunteer please contact Neil Versel through the official MSA Tour website.

Also remember to “like” their Facebook page at


Multiple System Atrophy Film Wins “Fan Favorite” at Neuro Film Festival

The Multiple System Atrophy Coalition announces the debut of “My Hero – An MSA Angel Story,” an inspiring video of courage and love at the Brain Health Fair during the annual American Academy of Neurology in Philadelphia, PA.


MSA Film entered in Neuro Film Festival

“My Hero an MSA Angel Story” by Alix Sun has been entered in the Neuro Film Festival.  This film was made in tribute to her “sweet beautiful mom Valerie Anne Stephanski – March 26, 1936 – July 28, 2012

Winning film will be screened at the American Academy of Neurology conference in Philadephia in April.

Please vote and share – votes close on March 27.

View the film and vote here for: “My Hero an MSA Angel Story”

Film can also be viewed at this facebook link:



On February 13, 2010 Bob Summers wrote this post on Miracles for MSA:

“Hello, Susan and I would like to share an idea with all of you 883 Miracle Fans. Why don’t we use the month of March each year as “Multi Systems Awareness Month”. The first day of Spring falls during this month, a time of renewal or rebirth. It seems to be a fitting time of year to reflect and dream big about our role to promote awareness and raise money for the much needed research. There are Fans on this Miracle page from around the world. There is a saying, “little things make big things happen!” This is one positive thing that we can all do together. We could wear purple ribbons or something that is purple which will bring attention to OUR CAUSE! Why purple? Many spring flowers are purple and it’s Sue’s favorite color. Open to suggestions on this.

Please give us some feedback on this idea. Make a comment or hit yes.

If anyone knows if we already have a “Multi Systems Awareness Month” please let us all know.

Thanks and God Bless,

Bob and Susan Summers

The rest, as they say, is history.   Bob and Susan’s idea caught fire and has echoed around the world.  Today there are 5159 fans of the facebook page “Miracles for MSA” which remains as the central rallying point for sparking fundraising activities and encouraging Multiple System Atrophy awareness worldwide.  Major fundraisers are now taking place, city and state governments have issued official proclamations and even signed bills into law in several states officially recognizing this month.  Our network of patients, caregivers, relatives, friends, medical and research professionals has expanded and ties between MSA organizations have deepened.  Collaboration is now the name of the game in awareness, fundraising, advocacy and research.

Thanks to all the MSA organizations around the world who have embraced this month and made it an important part of their annual activities.  Thanks to all the fans and participants of the Facebook and Yahoo pages and groups, you are the reason and the inspiration for all of this.  Thanks to all who work hard to raise funds.  Thanks to all the health advocates and ambassadors spreading the word about MSA and ensuring our legislators have it at the forefront of their agendas.  And thanks so much to all of our MSA research champions who work tirelessly to try to unravel the cause and seek to oneday find the cure.  If we stick together anything is possible.

Believe in the mission… Cure MSA!

Please sign the petition that has been circulating since 2011


Please view the list of  planned March Events


MSA Article from the Hamilton Area Dystonia Support Group Newsletter

Bonnie Llewellyn

MARCH 2014


A woman named Bonnie Llewellyn came to speak to us about a little known condition called Multiple Systems Atrophy (MSA). She has been living with her symptoms for about 5 years.

Unfortunately, it took 4 of those years to get a correct diagnosis.
MSA attacks every body system and breaks it down. The brain continues to function normally. There is no cure &, unfortunately, the prognosis is early death. But Bonnie has already beat her prognosis by 3 years by living as active & positive a life as she can.

Living alone, she has access to greater world with her electric wheelchair & with the help of the DARTS transport system. She has great support from her daughter & granddaughter. Bonnie plays championship darts and travels Ontario & across the border to compete with her team. She bakes, dances, has beers now & then.

She attended our Freedom to Move event last summer & arrived decked in the flashiest Dystonia blue decor, right down to her fingernails, which are always works of art.

There are 4 -6 people of every 100,000 diagnosed with MSA at this time. As it is with many dystonia patients, it is very difficult to find the right doctors & the correct diagnosis.

Bonnie is very fortunate to have Hamilton’s newest Movement Disorder Specialist (Dr. Connolly) as her neurologist.

It has been an honour to count Bonnie as a friend. She is lovely, intelligent & incredibly practical about her journey to come. We have been so very glad to have the opportunity to listen to her story & to ask questions which she answered honestly & bravely.
I look forward to seeing her again, at our Freedom to Walk, next June.
Find Bonnie on Facebook


2014-Mar-17: The Universal Notebook: Becoming Aware of MSA

2014-Mar-14: A $50,000 Research Grant has been awarded  by the Multiple System Atrophy Coalition for “A Stem-Cell Based Therapeutics Platform for MSA”

2014-Mar-05: Guest Post: My Nan and MSA

2014-Mar-03: What’s next for Kerry Simon in his battle against Multiple System Atrophy

2014-Mar-01: Raising awareness of Harleston mum-of-four’s incurable disease

2014-Feb-28: Fundraising success with Fabrily – Tips from MSA Awareness

2014-Feb-28: Chelsea Therapeutics Joins NORD in Promoting Awareness for Rare Disease Day

2014-Feb-20: VIDEO: Bright Side: Dying hair purple to help find a cure

2014-Feb-18: The Multiple System Atrophy Coalition, Other MSA Groups, Rock Stars, and Celebrity Chefs Rally in Support as CHEF SIMON SAYS FIGHT MSA!

2014-Feb-10: Special day overload? It’s a good day to celebrate something, anything, everything

2014-Feb-04: The Multiple System Atrophy Coalition® Awards $219,000 to Fund Five Promising MSA Research Projects

ACTION REQUIRED: Please distribute to your National representatives of Congress and ask for their support of a resolution declaring March as  Multiple System Atrophy Awareness month at the request of Congressman Keith Ellison.  To find out how to contact your member of congress please check this website.

Subject: Dear Colleague
From: “Mandelman, Elizabeth” <>
Date: Fri, February 21, 2014 5:34 pm
To: “” <>

Hi Pam,

Here is the Dear Colleague that I’m circulating to members of Congress in order to gather support for the MSA Awareness resolution. Please feel free to distribute. The more your members get in touch with their legislators, the more support we’ll gather.



Elizabeth Mandelman ▪ Legislative Assistant
Office of Congressman Keith Ellison (MN-05)
2244 Rayburn House Office Building
202.225.4755 ▪


Please distribute to members of congress:

Support March as MSA Awareness Month

Supported by: MSA Awareness

Please join me in supporting the designation of March as Multiple System Atrophy (MSA) Awareness Month by signing onto the MSA Awareness Month resolution.

MSA is a rare neurodegenerative disorder that has no cure. It causes the progressive loss of motor skills, unlabored breathing, speech, and other basic functions, ultimately leading to death. People with MSA typically live only six to ten years after the first signs of symptoms. It affects approximately 4.6 individuals per 100,000 in the United States.

Though little is known about the disease, it is not a black box. According to the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, MSA symptoms are caused by the slow death of nerve cells that control many of the functions that were previously done automatically or with little effort, like breathing or walking. It is possible that the nerve cells die because of an accumulation of a protein in the brain and spinal cord called alpha-synuclein. Alpha-synuclein accumulation is also thought to play a role in other neurological diseases like Parkinson’s disease. This important but basic knowledge is not enough.

The first step in accelerating research into MSA’s causes, potential treatments, and a cure is to raise public awareness. To ask any questions or to sign onto the resolution, please contact Elizabeth Mandelman on my staff at

Keith Ellison

Expressing support for designation of March 2014 as “Multiple System Atrophy Awareness Month” to increase public awareness of this progressive neurodegenerative disorder that affects the autonomic functions of the body.

Whereas Multiple System Atrophy is a fatal neurological disease diagnosed in approximately 15,000 patients in the United States;

Whereas as many as 35,000 more patients in the United States with Multiple System Atrophy are misdiagnosed with other more recognizable neurodegenerative disorders;

Whereas patients with Multiple System Atrophy lose the ability to walk, talk, chew, swallow, and even breathe over the course of a few years;

Whereas the incidence of Multiple System Atrophy in the United States has increased in recent years;

Whereas no specific risk factors or causes of Multiple System Atrophy have been identified;

Whereas there is currently no cure for Multiple System Atrophy;

Whereas the lack of awareness about Multiple System Atrophy has hindered research and the ability of researchers to obtain funding for their work;

Whereas public support and greater awareness of the need for research funding can aid in the discovery of the cause of and a cure for Multiple System Atrophy; and

Whereas March 2014 would be an appropriate month to designate as “Multiple System Atrophy Awareness Month”:
Now, therefore, be it Resolved, That the House of Representatives supports the designation of “Multiple System Atrophy Awareness Month” to increase public awareness of this progressive neurodegenerative disorder that affects the autonomic functions of the body.


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Celebrity spokesperson for MSA emerges

Feb 2, 2014

Celebrity chef  Kerry Simon of Las Vegas first revealed last December that he is suffering with Multiple System Atrophy.  Chef Simon is best known for his appearances on the Iron Chef TV series and by his nickname the “Rock N Roll Chef”.   His many celebrity friends have pledged their support in an upcoming fundraiser benefiting Multiple System Atrophy Research.  Chef Simon has also launched an awareness campaign “Simon Says Fight MSA”.

Please watch this space for the latest news and media links.


2014-Mar-03: What’s next for Kerry Simon in his battle against Multiple System Atrophy

2014-Feb-28: ‘Barry’ Simon’s grandiose MSA charity event boosted by Bill’s Murray-ment

2014-Feb-27: Official Kerry Simon Fundraising Event Flyer

2014-Feb-25: Kerry Simon: What I’ve Learned

2014-Feb-23: Kerry Simon’s intensive rehab program is the walk of his life

2014-Feb-19: VIDEO: Chef Kerry Simon opens up about Multiple System Atrophy

2014-Feb-19: Kerry Simon hosts charitable Rock ‘n Roll Cocktail Party

2014-Feb-13: Behold the Entire Lineup for Simon Says Fight MSA

2014-Feb-12: A Chef, His Brigade and the Indomitable Next Course

2014-Feb-06: Celebrity friends rally around ailing chef Kerry Simon

2014-Jan-29: VIDEO: Kerry Simon appears on MyNews3 Las Vegas

2013-Dec-13: Chef Kerry Simon Battling aggressive form of Parkinson’s

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Update: World Multiple System Atrophy Day

October 6, 2013

On World MSA Day (October 3rd) participants around the world are encouraged to walk a mile and light a candle in honor of their loved one with MSA.  The miles will be tallied soon and our total distance calculated, the goal being to collectively walk around the world, nearly 25,000 miles.

The results of the tally though are not nearly as important as seeing the interest and enthusiasm grow as people from all countries come together on this day in person and through the sharing of their photos on facebook.


Growing momentum for World MSA Day 2013 can be seen in the statistics from the Miracles for MSA facebook page. 35,000 people were reached during the week leading up to World MSA Day spreading awareness of this devastating neurodegenerative disease and making this year’s event a huge success!



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