Multiple System Atrophy Awareness

Spreading awareness worldwide

MSA COALITION NEWS

2014-Nov-30

MSA Coalition Announces Year End Fundraising Effort Devoted 100% to Research. DONATE BEFORE JANUARY 6TH!

At the November board of directors meeting the MSA Coalition reviewed their financial situation and agreed that all donations received until January 6, 2015 would be earmarked 100% for research.  They expect to announce the timeline for the next cycle of research grants very soon.

The grant cycle begins with an open call for research grant proposals.  These can come from any researcher located anywhere in the world.  After the cutoff date  proposals are reviewed by the MSA Coalition’s Scientific Advisory Board.  The top ranking projects (those deemed to have the best chance of advancing the field of MSA research towards a treatment or cure) are then recommended for funding.  Last year there were 19 MSA research proposals received from the US, Germany, Austria, Australia and the UK.  7 of these received funding for a total of $274,000.  The remaining projects were all deemed worthy of funding but there were no more funds available.

The need for research funds is urgent and ongoing.  Please consider the MSA Coalition’s research fund in your year end giving.  All donations are tax deductible under the 501 (c) 3 designation.  The MSA Coalition is committed to transparency and provides 990 tax forms downloadable via their website or upon written request.

Checks payable to:

MSA Coalition
9935-D Rea Rd #212
Charlotte, NC
28277

 

2014-Nov-5

Advocacy Working Group presents at Global MSA Research Roadmap Conference

The MSA Coalition and CureMSA were represented on the Advocacy Working Group Panel which presented their recommendations for future advocacy initiatives at the Global MSA Research Roadmap meeting in Las Vegas November 1-2, 2014.  The roadmap meeting was inspired by Chef Kerry Simon who announced in 2013 that he suffered from Multiple System Atrophy.  His organization Fight MSA has raised $500,000 so far to help the MSA cause.

2014-Oct-21

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

http://new.livestream.com/accounts/9435142/events/3471740

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!

2014-Aug-19

Our answer to the ice bucket…

Announcing the #MSAPurpleRain Video Challenge

http://www.multiplesystematrophy.org/msa-purple-rain-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

or

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

Details and a DONATE NOW button are here:  http://www.multiplesystematrophy.org/msa-purple-rain-challenge/

 

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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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RESEARCH NEWS

Latest Research News  – Please see more MSA research news here

2014-Nov-30

On November 1-2, 2014 over 50 MSA researchers met in Las Vegas for the Global MSA Research Roadmap conference.

Dr. Ryan Walsh describes how this event came about and the goals and highlights of the meeting.

Watch Dr. Ryan Walsh here

 

2014-May-09

“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.

2014-May-02

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

2014-Apr-28

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: http://www.prnewswire.com/news-releases/parkinsons-vaccine—top-experts-unite-in-european-consortium-256973531.html

2014-Apr-17

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.

Purpose:

• 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

Outcomes:

• 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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Announcing the Don Summers’ Memorial Multiple System Atrophy Travel Award

October 1, 2013

Since 2004 the MSA Coalition, formerly the Shy Drager Syndrome/Multiple System Atrophy Support Group, has funded an annual MSA Research Award to the most outstanding abstract submitted to the American Autonomic Society research meeting.

This award has been renamed to honor past president Don Summers who will be remembered for his pioneering work to spread awareness and support MSA families.

Read more about the award and the past recipients.

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Quest to Cure MSA

September 28, 2013

Please watch this new VIDEO:  Rex Griswold’s Quest to Cure Multiple System Atrophy

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MSA Awareness still has some catching up to do

September 23, 2013

When Professor Gregor Wenning met with patients in Sydney last June he mentioned that Multiple System Atrophy is just as common (or rare) as ALS and Huntington’s Disease. Both of those diseases are well known by the general public. He said “With MSA we are a few years behind in our awareness”. Part of the problem with awareness was that for many years MSA was called by three separate names depending on which symptoms were most prominent. If you had mostly balance issues (cerebellar ataxia) it was called Olivopontocerebellar atrophy, if you had mostly parkinsonism it was called Striatonigral Degeneration and if you had mostly autonomic symptoms it was called Shy-Drager Syndrome. Even though Multiple System Atrophy was first proposed in 1969 as one disease entity that encompassed all of the above possible symptom manifestations, it wasn’t until 1989 that it started to be used more in the scientific literature. In 1998 research and clinical experts met and decided on a strict set of diagnostic criteria to allow doctors to more easily make the correct diagnosis of possible or probable Multiple System Atrophy. These criteria were refined even further in 2007 by comparing the observed symptoms with pathology reports of confirmed cases of Multiple System Atrophy. Still today the only way to diagnose MSA with 100% certainty is after death with a prearranged brain donation. The hope is that a biomarker will be found that will allow a definite diagnosis to be made very early in the disease so that interventions may happen sooner.

View the presentation by Prof Wenning

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Announcing New Worldwide Movement Disorder Society MSA Study Group (MODIMSA)

September 20, 2013

Goals of the new Worldwide Movement Disorder Society MSA Study Group (MODIMSA) – a collaborative network for MSA researchers led by Professor Gregor Wenning:

We plan to develop a common data-set, including disease-specific validated rating scales for harmonized data acquisition. Second, we intend to launch a global MSA patient registry. Third, we will launch studies focusing on the discovery of diagnostic and surrogate (bio)markers, and determination of environmental and genetic underpinnings. Finally, we will develop consensus (best-practice) guidelines for the standard of care in MSA (based on the principles of evidence-based medicine).

To this end, we defined the following specific aims:

1. To establish a global patient registry
2. To set up a decentralized biomaterial bank and thereby define standard operating procedures to harmonize blood, CSF and brain tissue sampling.
3. To identify MSA genetic risk loci using large-scale genome-wide association studies
4. To develop, translate and validate additional MSA-specific rating scales
5. To define and validate autonomic progression markers
6. To define and validate MRI and functional imaging surrogate progression markers
7. To develop interventional trial guidelines
8. To develop best-practice (evidence-based) guidelines for pharmacologic as well as non-pharmacologic treatments.
9. To investigate MSA pathophysiological mechanisms and screen candidate compounds in preclinical MSA models

Need for a study group in the field
Multiple system atrophy (MSA) is a rare and relentlessly progressive movement disorder with an estimated prevalence of 4/100,000 people (Schrag 1999). There is currently no treatment available to significantly alleviate motor and autonomic symptoms or to modify the natural course of the disease. In addition, there are no widely accepted guidelines on symptomatic treatment strategies available.

To date, clinical MSA research has been limited by the low prevalence rate preventing individual research sites from studying sufficient patient numbers. Thus, a coordinated effort at an international level is required to advance MSA research in the field of biomarker discovery, early diagnosis, definition of genetic underpinnings and translational drug development. Consequently, an administrative framework for global collaborative MSA research is needed.

Prof Wenning welcomes donations towards this effort email ProfGKWenning@MSAawareness.org for details.

See:  http://www.movementdisorders.org/about/leadership/committee_details.php?content_id=1184

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TGen MSA Research Registry

September 7, 2013

TGen MSA Research Registry

“Quest to Cure MSA in honor of Rex Griswold”

Thank you for your interest in the Translational Genomics Research Institute(TGen) MSA Research Registry.

While we are not currently enrolling participants in a study at this time, adding your name to our registry database allows us to contact you if/when you become eligible for a research study.

Your Privacy Matters

Your contact information will go directly to the Clinical Research Coordinator at TGen. TGen strictly adheres to established confidentiality procedures that are intended to protect the identity of research participants.

If you have questions prior to completing the online registry form, please contact the Clinical Research Coordinator by email at: msaregistry@tgen.org.

Register Today!

To begin the registration process, please visit www.curemsanow.org

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New MSA Research Study

September 7, 2013

Seeking Volunteers for Multiple System Atrophy Research Study

The Department of Neurology at the University of Michigan is conducting a research study of brain imaging and clinical symptoms, including problems with movement and loss of balance, speech and swallowing difficulties, significant drop in blood pressure and bladder and/or bowel regulation in Multiple System Atrophy (MSA).

Seeking patients diagnosed with MSA. Subjects may be either male or female, ages 30 and over.

Eligible volunteers will undergo:
- Questionnaires on symptoms
- Movement and memory testing
- Brain MRI Scan
- PET Brain Scans

Participants will receive compensation for study participation at completion of the study. Volunteer fees are paid and support of travel and lodging costs are available.

Call: 734-936-8281
Fax: 734-764-6444
Email: arijit@umich.edu

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