Multiple System Atrophy Awareness

Spreading awareness worldwide


2014-Nov 21

Watch the recorded webcast of the recent  MSA Coalition Patient Caregiver Conference.

Note there are two videos, the bottom video contains:

Morning presentations
8 minute mark: Official opening by Judy Biedenharn, President of the MSA Coalition
14 minutes: Dr Karen Thomas – The Clinical Presentation of MSA
1 hour 11 minutes: Q & A with Dr Thomas
1 hour 46 minutes: Break
2 hour mark: Dr Kamal Chemali and Kevin McNeeley – Autonomic Testing
3 hour mark: Introduction of Board Members – Vera James, Carol Langer, Tom Looney, Larry Kellerman, Cynthia Roemer, Philip Fortier
3 hours 7 minutes: The Story of Tim’s MSA Shoe
3 hours 8 minutes: Thanks to our conference sponsor Lundbeck

The video at the top contains:

Afternoon presentations
1 minute mark: Remarks about the MSA Coalition research grant program by Pam Bower, Co-Chair of the MSA Coalition Research committee
5 minutes: Dr Vik Khurana
50 minutes: Dr Lucy Nordcliffe-Kaufmann
1 hour 6 minutes: Dr Horacio Kaufmann
1 hour 57 minutes: Break
2 hours 18 minutes: Q & A with doctor panel
3 hours 12 minutes: Ending on a positive note!


October 3rd is World MSA Day!





Shop for MSA Awareness hoodies:

After just 3 days the latest fundraiser for MSA research has earned $1000! With 3 more weeks to go a goal of raising $5000 or more is very achievable.

You can help!

We are selling these awesome hoodie sweatshirts with MSA awareness logo in multiple color choices. Share the link with family and friends and encourage more sales.

October 3rd is World MSA Day.  Let’s sell some hoodies for MSA research!




Our answer to the ice bucket…

Announcing the #MSAPurpleRain Video Challenge

NEWSFLASH: There is an anonymous donor who has pledged to MATCH all donations to the ‪#‎MSAPurpleRain‬ Video Challenge up to a total of $25,000!!! Great way to kick things off!


The MSA Purple Rain Challenge (#MSAPurpleRain) is simple:

Oops, don’t forget to turn on your video camera (a smart phone works, too.)

Post your videos on social media sites and use the hash tag:  #MSAPurpleRain

“Let’s Get Crazy” for MSA Awareness and Raise Money, Too!

The MSA Purple Rain Challenge Ask:

Choose to make a video and post it using #MSAPurpleRain – Donate just $10


Pass on making a video – We ask for a $100 donation

Details and a DONATE NOW button are here:



The Ice Bucket Challenge Phenomenon has hit!

The ALS Ice Bucket Challenge has inspired some MSA families to also give a shout out to as they brave the frigid waters in the name of more awareness for rare and deadly brain diseases.

Those inspired by the ice bucket challenge to donate to help Multiple System Atrophy are requested to give to the Multiple System Atrophy Coalition in the USA or the Multiple System Atrophy Trust in the UK..


Pete Beard has REASON TO LIVE! He’s battling Multiple System Atrophy but that hasn’t stopped him from living his dream to compete in a World Sailing Championship.

Sailing under MSA purple… Australian sailor Pete Beard is DEFYING THE PROGNOSIS of Multiple System Atrophy. Sailing is his REASON TO LIVE and his dream is to win a World Championship Sailing Race. Halifax, Nova Scotia, Canada – August 2014
Follow Pete’s progress here:

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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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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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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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