An easy way to support the MSA Coalition

I’ve just installed the iGive button in my Web browser. It’s a quick way to support the Multiple System Atrophy Coalition when shopping online at nearly 1,700 online stores. It’s not a lot of money, but it seems easy.

The button plug-in works with the following browsers:

  • Internet Explorer 7.0 – 11.x
  • Firefox 3.0 – 40.x
  • Safari 4.x – 8.0.x
  • OS X 10.5 & 10.6
  • Chrome 9.0 – 44.x

There are also iPad and Android apps available through the respective app stores.

I’m going to share this post on the Make Your Mark: MSA Awareness Tour Facebook page. If I and two other supporters of the MSA Coalition make a purchase by November 21, we earn an additional $50 bonus.

Kerry Simon, 1955-2015

The multiple system atrophy community lost one of its greatest assets today, Las Vegas-based chef Kerry Simon, who bravely became the public face of the fight against MSA two years ago by going public with his illness. Kerry died early this morning in hospice care in Las Vegas at the age of 60.

As I said on Facebook two days ago when I learned Kerry had been moved to hospice, I never personally met Kerry Simon, though I did meet his brother, Scott, at our pre-tour kickoff in July 2014 at Chuck’s: A Kerry Simon Kitchen in Chicago and talked to some of his associates. Seeing all the tributes to Kerry in words and pictures online makes me recall my dad’s horrific, final days in 2012. It’s not fair to see someone waste away in agony from an evil disease like Multiple System Atrophy. May Kerry rest in peace, may his loved ones be comforted and and may we someday find a cure for MSA.

I am not aware yet of any memorial plans or any requests for donations, but Kerry and friends did set up an organization called Fight MSA. Myself, I always encourage support of the Multiple System Atrophy Coalition.



Cause of multiple system atrophy, Parkinson’s identified

This is potentially the biggest news about multiple system atrophy to date: Researchers in Belgium and France have identified a cause of this and other similar neurodegenerative diseases.

The shape of a protein called alpha-synuclein in the brain determines whether a person will develop MSA or Parkinson’s disease, according to a paper published online Wednesday in the scientific journal Nature.

Full access to the article is restricted to subscribers and the research community, but here is a press release from the University of Leuven in Belgium:

Single protein causes Parkinson’s disease and Multiple System Atrophy

Several neurodegenerative disorders are caused by aggregates of a single protein known as alpha-synuclein. In collaboration with CNRS and the University of Antwerp, KU Leuven neurobiologists have discovered that the shape of these aggregates – ‘cylinders’ or ‘ribbons’ – determines whether a patient develops Parkinson’s disease or Multiple System Atrophy, respectively.

Typical of neurodegenerative disorders is the disrupted communication between brain cells together with a loss of cells in specific brain regions. For some brain diseases this phenomenon is linked to a protein known as alpha-synuclein. The exact function of this protein remains unclear, but it may play a role in the communication between brain cells. However, in the case of specific diseases, including Parkinson’s disease, Multiple System Atrophy (MSA), and dementia with Lewy bodies (DLB), this protein forms aggregates that cause neurodegeneration.

“When alpha-synuclein aggregates accumulate within a brain cell, they interfere with the normal functioning of the cell. The protein aggregates disrupt the communication between brain cells, resulting in cell death. Up to now, nobody understood how aggregates of this single protein could induce different pathologies,” says Professor Veerle Baekelandt from the Research Group for Neurobiology and Gene Therapy.

“You could compare it to the construction of a house,” doctoral researcher Wouter Peelaerts explains. “With the same building blocks – in this case the alpha-synuclein protein – you can create many different structures. In 2013, Professor Ronald Melki and his colleagues from CNRS isolated several forms of fibres called ‘strains’. The two most important strains were cylinder-shaped fibres reminiscent of spaghetti and broad ribbons that resemble linguini. We injected these fibres separately into the brain and blood stream of rats. We noticed that the rats developed different symptoms: while the ‘cylinders’ induced Parkinson’s disease, the ‘ribbons’ caused MSA symptoms.” This clearly demonstrates that distinct diseases result from alpha-synuclein fibres that are structurally different.

“We are gaining more insight into the differences between the diseases. But we suspect that more fibres with different shapes and effects are waiting to be discovered, apart from the two that we examined in this study. In any case, our findings open up possibilities for the development of new treatments. A drug that counteracts the development of aggregates could be used to treat a whole range of brain diseases.”

Next up: finding a treatment, then a cure.

MSA activist wins award

Multiple system atrophy is a rare disease, which makes it so important to educate others about it. One of the best at doing so is Pam Bower of Halifax, Nova Scotia, who lost her mother-in-law to the monster called MSA. If you are a member of any of a number of MSA-focused Facebook groups, you probably are familiar with Pam.

It has been a good week for Pam. First off, today is her her birthday. More importantly, though, she just received a nice honor, namely “Best In Show: Facebook” in the fourth annual WEGO Health Awards. Watch the short video announcement here.

WEGO Health is a network of more than 100,000 health activists who use social media to be “empowered” patients, caregivers and activists. If you want to know more about the e-patient movement, I’ve written plenty about it in my regular job as a healthcare journalist. Here are a couple of examples:

I encourage everyone with MSA or any other serious health condition to take a more active role in their own health and healthcare.

Video: The ABCs of MSA

In case you didn’t know, March is MSA Awareness Month. I did a small part by making my birthday (March 6) a fundraiser for the Multiple System Atrophy Coalition. We raised $833 for the cause, but more importantly, spread the message to new people.

Here I am with my mom celebrating the occasion. 20150307_221059

Misty Valenta of San Antonio, who lost her mother to MSA last year, is doing her part as well. Here’s a video she put together recently, using her toddler nephew to demonstrate “The ABCs of MSA.” What a great way to explain this evil disease in less than two minutes!

Fundraising party March 7 in Chicago

If you will be in Chicago on March 7, please join me for a birthday party/MSA fundraiser on the North Side of the citAwareness whitey at 7 pm CST. I’ve rented the party room in my condo building and gotten my cousin, Chef Jaime Mestan, to cater the event.

I’m requesting $30 donations to support the Multiple System Atrophy Coalition. Since condo rules won’t let me advertise this event to the public, e-mail me at or find me on Facebook and I will send you an invitation.

Remember, March is MSA Awareness Month. Wear your purple (US, Canada) or orange (UK, South Africa).

First comprehensive review of MSA published in New England Journal of Medicine

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, 2015NEW YORKThe 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

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,

About the Multiple System Atrophy Awareness movement

The website 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.