Latest Research News – See more MSA research news here
December 8, 2013
Summary of MSA Research Proposals received by the MSA Coalition
as of November 29, 2013
1. Establish a global registry dedicated to MSA patients.
(To facilitate future worldwide clinical trials in MSA and record the progression pattern of the disease over time based on various measurements)
Amount requested: $44,000
2. Stem cell-based Therapeutics Platform for Multiple System Atrophy
(To allow for more accurate evaluation of potential drug therapies for MSA)
Amount requested: $50,000
3. Peripheral delivery of brain-targeted neurosin an alpha-synuclein degrading enzyme as a novel treatment for MSA.
(Drug study in a MSA mouse model)
Amount requested: $50,000
4. Mechanisms of Excessive Daytime Sleepiness and Sleep Related Respiratory Dysfunction in MSA
(To explore the underlying cause of these symptoms with the aim of providing treatment)
Amount requested: $50,000
5. Biomarker Development in Multiple System
To determine the amount of alpha-synuclein in cutaneous autonomic fibers of MSA patients.
(To allow for a more accurate diagnosis and to potentially measure progression)
Amount requested: $49,000
6. Evaluation of the effects of caspase-1 inhibition in a transgenic mouse model of multiple system atrophy
This preclinical proof-of-concept study opens the way for translating an innovative treatment with potential disease-modifying properties to MSA patients.
Amount requested: $24,000
7. Determine global transcriptome pattern in distinct regions of MSA brains using next generation sequencing.
(This is a study involving underlying genetic mechanisms in MSA)
Amount requested: $40,000
The Multiple System Atrophy Coalition currently does not have sufficient funds to provide support to all of these projects. Your help is urgently needed. Please donate online today.
You may also donate by check payable to:
8311 Brier Creek Pkwy
Raleigh, NC 27617
All donations received by year end will go immediately to the MSA Research Fund to be used to support vital research towards understanding the cause and finding a cure to this devastating disease.
Thank you so much for your generous support.
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”.
Link to the Press Release online
Professor Gregor Wenning has one mission in life: to find a cure for Multiple System Atrophy. To many this would seem like a mission impossible. How does one even hope to cure such a complex neurodegenerative disease? Especially one that so far has confounded all attempts to completely understand its cause, or to slow the relentless onslaught of symptoms that rapidly renders victims unable to walk, swallow, speak and breathe.
FOR IMMEDIATE RELEASE
Prof. Gregor Karl Wenning, MD PhD MSC
PRLog (Press Release) – Oct. 27, 2013 – INNSBRUCK, Austria — Professor Wenning has spent his entire career of over 20 years passionately working towards fulfilling his mission of curing Multiple System Atrophy. In that time he has published in excess of 200 papers on the subject, more so than any other researcher in the field. Certainly there are few as qualified as he to write the first ever medical textbook on the subject. Just released from Springer, see “Multiple System Atrophy” edited by Gregor K. Wenning and Alessandra Fanciulli.
Aimed at medical students, neurologists and basic neuroscientists this book will serve to fill a gap in the curriculum of medical schools who currently give very little attention to this devastating neurodegenerative disease despite it being as common as the more well-known but similar Lou Gehrig’s Disease or ALS.
“It is my hope that with this book clinicians will become more aware and this will translate to better recognition and diagnosis of the disease much earlier in patients”, says Wenning.
“Most physicians and medical support staff have never heard of Multiple System Atrophy”, says Cathy Rapenport whose husband Marvin, a former policeman, currently suffers from the disease, “This is extremely frustrating for patients and families seeking answers and medical intervention. Prof. Wenning’s book is a blessing to the MSA and medical communities. This gives us hope”.
All profits back to research
Not only does Prof. Wenning want to achieve his mission to cure Multiple System Atrophy, he will be putting his own money to work to do it. He has pledged to donate all personal proceeds from his book back to the MSA research effort at the Medical University of Innsbruck where he has established an elite team of researchers focused exclusively on Multiple System Atrophy. His lab at the Division of Neurobiology is also the hub of the newly created Movement Disorder Society MSA Study Group (MoDiMSA-SG).
This new worldwide collaborative network led by Wenning, unites researchers from around the world who have all taken on the challenge to work together on uncovering the cause which will lead to a cure for Multiple System Atrophy.
“My colleagues and I are serious about wanting to find viable treatments and ultimately a cure for this disease.” says Wenning. “It would be inconceivable that I make a profit from this book, it must be used for the greater good.”
“I am overjoyed that Prof. Wenning is doing this”, says Cathy Rapenport, “It shows he truly has a personal interest in finding a cure for MSA. How many researchers invest their own money in what they believe?”
Professor Gregor Wenning is available for media interviews, please contact author to arrange.
To find out more about Multiple System Atrophy please go to www.MSAawareness.org
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More about Professor Gregor Wenning
Prof. Wenning is at the forefront of research on the rare and life limiting neurodegenerative disease, Multiple System Atrophy. He heads the Division of Neurobiology at the Medical University of Innsbruck Austria. He co-founded the European MSA Study Group in 1999. He is chair of the Movement Disorder Society MSA Study Group, a newly formed worldwide network for MSA researchers. He can be contacted via his website.www.i-med.ac.at/neurobiology
About the Multiple System Atrophy Awareness movement
Through the website www.MSAawareness.org and the annual March MSA Awareness month campaign, the goal is to forge connections worldwide to bring the MSA community together, sharing information and resources while raising the profile of the disease and encouraging fundraising for Multiple System Atrophy research.
The first medical text book on Multiple System Atrophy by Gregor K. Wenning is now available from Springer
Order the book
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!