This blog has been on hiatus for a while as we Northerners shiver through another winter, but here’s something I absolutely had to share. The first comprehensive review of multiple system atrophy in a major medical journal appeared last week in the renowned New England Journal of Medicine, and it comes from probably the world’s leading MSA researcher, Dr. Gregor Wenning of the Medical University of Innsbruck, Austria, and a research partner, Dr. Alessandra Fanciulli, of Sapienza University in Rome.
Here is a link to the abstract of the article; full access is restricted to NEJM subscribers, or anyone who wants to purchase single-article access can do so for $20. (Fortunately, major institutions and a lot of independent physicians and researchers — the intended audience — already do subscribe.)
I also can share the press release put out by MSA Coaliton board member Pam Bower. I did help edit it, after all. :)
Multiple System Atrophy review published in prestigious New England Journal of Medicine
Jan. 14, 2015 – NEW YORK — The world’s foremost researcher of Multiple System Atrophy (MSA), a rare, neurodegenerative disease that is always fatal, has had a review of the history of MSA progression and research published in the renowned New England Journal of Medicine.
Publication of this review article about MSA is yet another milestone in the expansive career of Gregor K. Wenning, M.D., Ph.D., neurologist at Medical University of Innsbruck, Austria.
Dr. Wenning has spent more than 20 years passionately working toward fulfilling his mission of curing one of the most devastating yet little-known neurological conditions that affects as many as 50,000 Americans. In that time, he has published in excess of 200 papers, more than any other researcher in the field. In 2014, Dr. Wenning and Alessandra Fanciulli, M.D., of Sapienza University of Rome, Italy, co-authored the first medical textbook on the disease, which led to the New England Journal of Medicine inviting Dr. Wenning and Dr. Fanciulli to submit a review article.
“To have an article on Multiple System Atrophy appear in the most widely read medical journal in the world is a culmination of many years of hard work by Dr. Wenning and a dream come true for advocates working to bring awareness to this disease that has no treatment and is always fatal,” says Pam Bower, a long-time advocate for the disease. “A copy of the New England Journal of Medicine potentially sits in every doctor’s office in the US and around the world. The level exposure for this rare disease among the medical community is unprecedented.”
Dr. Wenning’s neurobiology lab at the Medical University of Innsbruck is at the core of the recently created Movement Disorder Society MSA Study Group. Chaired by Dr. Wenning, this collaborative network unites scientists and clinicians from around the globe who are on a mission to cure Multiple System Atrophy. “My colleagues and I are serious about wanting to find viable treatments and ultimately a cure for this disease.” says Dr. Wenning.
The publication of the review article comes closely on the heels of a major research meeting focused on Multiple System Atrophy. Held in Las Vegas in early November, the Global MSA Research Roadmap Meeting brought together more than 50 MSA experts, industry and government representatives, as well as ardent advocates for a two-day think tank that culminated with presentations by eight different working groups focused on selected areas of expertise. The overarching goal of the meeting was to take MSA research to the next level by developing a strategy that will lead quickly towards a cure for this devastating disease.
“This was a very important meeting that has been needed for some time and I was pleased to have been involved as a member of the advisory committee and as chair of the working group on preclinical research in MSA,” says Dr. Wenning.
In February, Dr. Wenning and colleagues at the Medical University of Innsbruck will host an equally important meeting. Global experts will present lectures on the current state of knowledge about the protein alpha-synuclein, which has been implicated in the neurodegenerative process in both Parkinson’s disease and Multiple System Atrophy.
“Things are really starting to come together for Multiple System Atrophy. We now have a celebrity (Las Vegas-based Chef Kerry Simon) who has gone public with having the disease. We also have an increased global interest among the research community and we are getting unprecedented exposure with the general medical community with this publication in the New England Journal of Medicine. What we are still lacking and really need now, more than ever, is a major fundraising effort brought to bear on this disease. My neurobiology lab in Innsbruck has been at the forefront for many years working diligently on this problem and we are poised to expand our efforts as new research monies will allow,” Dr. Wenning says.
Dr. Wenning is available for media interviews.
To find out more about Multiple System Atrophy, visit www.MSAawareness.org.
About Dr. Gregor K. Wenning, M.D., Ph.D.
Dr. Wenning is at the forefront of research on the rare and life-limiting neurodegenerative disease, Multiple System Atrophy (MSA). He holds a professorship and heads the Division of Neurobiology at the Department of Neurology of Innsbruck Medical University in Austria. He co-founded the European MSA Study Group in 1999. He is the chair of the Movement Disorder Society MSA Study Group, a worldwide network for MSA researchers. He sits on the scientific advisory board of the US-based Multiple System Atrophy Coalition and the UK-based Multiple System Atrophy Trust. Dr. Wenning can be contacted via his website, http://www.i-med.ac.at/neurobiology.
About the Multiple System Atrophy Awareness movement
The website www.MSAawareness.org and the annual March MSA Awareness month campaign have forged connections worldwide, bringing the MSA community together, sharing information and resources while raising the profile of the disease and encouraging fundraising for Multiple System Atrophy research.
If you know anyone in national media, please pass this on, as Dr. Wenning would like to be interviewed by a major U.S. TV news network or newspaper. It would be a good story around coverage of, say, International Rare Disease Day, Feb. 28. We need as much exposure as we can get for this terrible, rare disease.