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.

Buy tour t-shirts, now through Sept. 18

We’re selling tour t-shirts, based on the design of our jerseys. Proceeds benefit the Multiple System Atrophy Coalition. You have until Sept. 18 to order via Teespring. Orders in the USA should arrive in time for World MSA Day on Oct. 3. (You’d better believe I’ll cycle a mile.) Men’s shirts are $22, women’s are $21, plus shipping.

Click here to buy.




Making the ALS Ice Bucket Challenge about MSA

When the Ice Bucket Challenge for amyotrophic lateral sclerosis (ALS) started going around last week, I was a bit jealous at all the attention being heaped on this horrible condition, also known as Lou Gehrig’s disease.

While I certainly feel awful for anyone suffering from ALS, I wished multiple system atrophy (MSA) would get even a fraction of that attention. After all, both are severe neurodegenerative diseases, both are always fatal and neither has any truly effective treatments. MSA is only slightly more rare than ALS, but since nobody of the magnitude of Lou Gehrig or Stephen Hawking has ever had it, it’s virtually unknown.

Fortunately, last Friday, I was issued the Ice Bucket Challenge for  by Dr. Jonathan Teich of medical publishing company Elsevier and Brigham and Women’s Hospital in Boston. Knowing that I had lost my dad to MSA, he gave me a special shout-out in his own video. I took the idea and ran with it. My video links to several MSA resources, including Pam Bower’s MSA Awareness site and my own Make Your Mark: MSA Awareness Tour page.

I challenged the board of the MSA Coalition as well as Chef Kerry Simon and his brother, Chef Scott Simon. Kerry Simon, as readers of this blog know, is fighting MSA himself.

After posting this video, YouTube directed me to another video from another person, Geoff Inman, whose father died from MSA. Let’s make this idea go viral, or as viral as we can.

Meantime, the MSA Coalition has come up with its own video contest in hopes of creating a spark like the Ice Bucket Challenge with the MSA Purple Rain Challenge. Here are the details:

The official color of multiple system atrophy awareness is purple.  As such, we want to celebrate the 30th anniversary of Prince’s Purple Rain album, while generating greater awareness for MSA.

The MSA Purple Rain Challenge is simple:  

  • Put on your purple (preferably an official MSA Coalition tee-shirt)
  • Invite your friends, family, and/or coworkers
  • Set up some rain (maybe with a sprinkler or a hose if no heavy rain is in the forecast)
  • Turn up the music (Purple Rain)
  • Start dancing
  • Hold up signs about multiple system atrophy
  • Challenge others to do the same.

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!

“Purple” is the color of the sky at dawn, blurring blue and red, a time of transition mixing the dreary with the sublime. “Rain” can represent sadness (and tears), life’s troubles, or fears…but it can also represent a type of cleansing and clarity.  Multiple system atrophy patients and families go through this range of emotions every day. That’s why, this summer, we want to see all of you out dancing in the purple rain!

Can you imagine how much silliness and fun we can all have while helping raise funds and bringing greater awareness to Multiple System Atrophy?!

Who knows?

We might just get a gem or two in the form of a video, that goes viral and does wonders to help generate awareness for this rare disease!  At the very least, this worldwide Purple Rain tribute to MSA will be a blast and help us #DefeatMSA!

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

DONATE NOW (Secure donations through Network for Good)

In your video and in your social media posts asks others to take the challenge.

Disclaimer: As copying is the sincerest form of flattery, we thank the ALS Ice Bucket Challenge for helping to inspire ideas around our own original idea to create MSA awareness and sell tee-shirts using the Purple Rain theme.

Who’s game? If you need an MSA t-shirt (white, but with black and purple printing), I’m now selling shirts from the MSA Awareness Tour for a limited time, until Sept. 2.)

MSA Awareness Tour was challenging, exhilarating

Sometimes things don’t go exactly as planned.

For example, I had been planning on blogging often during Make Your Mark: MSA Awareness Tour 2014, but this is my first post in nearly a month. That’s in part because I didn’t take a computer with me on the tour because we ended up not having a support driver and because, well, I was just so spent at the end of most days.

Having to carry things with us on our bikes slowed us down considerably. A couple of wrong turns didn’t help things. There also was a semi-emergency stop in DeMotte, Ind., on just the second morning to have an infection on my right knee treated at a CVS MinuteClinic. (No, the bandage I wore for the entire trip was not from a cycling injury. An insect bite from a few days earlier somehow turned into cellulitis.) We also encountered severe thunderstorms on Day 4 that forced us off the road three times, a hilly road in Southeastern Ohio torn to gravel by heavy trucks supporting an oil and gas boom, plenty of headwinds and a couple of uncomfortably warm and humid days — par for the course in the middle of summer.

We did cheat a bit. We cut out a planned stop in Celina, Ohio, because it made more sense to ride through Muncie, Ind., than to head due east from Kokomo, Ind. Instead of riding through Western Maryland to meet up with other riders in Hagerstown, Md., on July 12, we rerouted to Pittsburgh, rented a car, then drove to Hagerstown, with an overnight stop in Morgantown, W. Va. We still clocked 727 miles (1,170 km), and had some incredible experiences along the way. I’d call that a success.

The medical issue, plus a road turning into a freeway — no bikes allowed — meant that we didn’t make it to Kokomo the second night. Instead, we backtracked a bit and found a place to stay in the town of Logansport, about 30 miles to the north. It was there that we first realized that the trip was as meaningful as we hoped it would be.

Logansport hotel roomWe got Room 117 at our hotel that night. My dad’s birthday was January 17.

Yeah, he was with us. We felt energized and inspired after a very long, tiring day.

When we finally got to Kokomo the next morning, we felt obliged to take a selfie at the city limits. We earned it.

Kokomo 1

Then, what was supposed to have been dinner the night before turned into brunch with three people affected by MSA: Chris Markiewicz, who has been fighting the disease for a remarkable 11 years — and still speaks pretty clearly and walks without assistance—plus Renate Sharp and Francie Hutton, who both lost their husbands to MSA. They were wonderful hosts and a great support network for each other. Importantly, it was the first time my Uncle Malcolm had met others t0uched by this horrible illness. It was another sign that we were not alone on this journey.

We met some great people along the way. Two days after Kokomo, as we were headed to the Dayton suburb of Kettering, Ohio, we stopped for lunch in the tiny town of Eldorado, Ohio, population 505. The only restaurant in town was Suds, a prototypical dive bar that happened to have very good food. There were just two other patrons in the bar, local farmers named John and Gary. We told them why we were passing through town, and explained what MSA is. They were so touched by our story that John gave us $10 and Gary $20 as they left. Those are small donations in the grand scheme of things, but for farmers in rural Ohio, that may have been a lot of money. What a kind gesture.

Later, as the skies opened up for the third time that afternoon, we ducked behind a shed to shelter ourselves from the wind, if not the rain. Well, the family inside the adjacent house saw us, opened their garage door and invited us to wait out the storm in their garage. Nearly an hour later, after lightning, hail and perhaps some frogs and vermin too, they wouldn’t let us go without offering us some water and Gatorade to take with us.

That evening, we got to Kettering hours behind schedule, but no matter. Frank and Susan Cervone were still there, at La Rosa’s restaurant, with friends and family, where they raised about $800 for the MSA research lab of Dr. Charles Ide at Western Michigan University. We helped draw raffle prizes, and were featured on the local news in Dayton. One of the raffle winners gave us part of her prize, a free night at a local hotel. It was much appreciated, and again highlighted the generosity and kindness of so many people we encountered along the way.

One night later, Frank Cervone had to go to the emergency room due to dizziness, one of many symptoms MSA patients have to deal with. This disease is not a laughing matter.

Hours before Frank was hospitalized, we rode into Columbus, again way behind schedule, but to a rousing welcome on the patio of Logan’s Roadhouse for an event hosted by Cathy and Marv Rapenport and Multiple System Atrophy Coalition board member Judy Biedenharn. Judy is another MSA widow, and Marv is dealing with MSA right now; in fact, he wasn’t feeling so great, and went home before we got there, but Cathy was gracious enough to invite us to stay over with her that night, so we were able to meet Marv. That event brought in $778, as Logan’s donated 20 percent of the checks of everyone in the party, including one woman who had lost her husband to MSA just three weeks earlier.

Oxford Road

Two days later, we had planned on stopping at the home of MSA patient Scott Greenlee and his wife, Lori, in St. Clairsville, around lunchtime. But we took a wrong turn and ended up on a hilly, gravelly nightmare known as Oxford Road. That misadventure cost us at least two hours, probably more. We were not happy when we got to the end of it.

The weather got hot. We got tired and hungry. We kept slowing down. We eventually made it to St. Clairsville an hour before sunset, where Lori Greenlee was waiting for us on the corner with a welcoming sign, and a whole lot of hospitality.

St Clairsville welcome

She invited us for dinner. Then she invited us to stay over. More importantly, she introduced us to Scott, who hasn’t wanted to leave the house as his motor skills have declined due to MSA. He still walks on his own, but stairs are tricky, and his speech is slurred, just like my dad’s was. He can’t work anymore, and can’t enjoy his art hobby. It’s so sad to watch, but I think the Greenlees were genuinely uplifted by meeting others who understand exactly what they are going through.

No, I’m absolutely certain they were uplifted by our visit. A couple days after I got home to Chicago, a package arrived in the mail. It was a printed copy of an article about the tour (with the above photo) in the St. Clairsville Times Leader, as well as a special surprise: one of Scott’s paintings. (Malcolm got a similar package the same day.) What an awesome gesture. I can’t tell you how touched I was, and honored to call Scott and Lori my friends.

After our roundabout trip to Pittsburgh and drive to Hagerstown, we met up with some other riders for the final full day, including my brother, David. Davi Cohen’s cousin out in Arizona is declining rapidly from MSA, so she and her husband Rich, an incredible cyclist even at age 71, drove down from New Jersey to Rich could ride with us. Thanks also to Mike Guerrieri, whose mother died from MSA in 2011, and his friend Richard. (Check out the song Mike wrote in memory of his mom.)

The temperature soared to close to 95 degrees Fahrenheit, with a dangerous heat index of 105 on that Sunday afternoon, July 13, so two riders didn’t finish. There’s no sense in pushing it when you get overheated. Again, this time due to the heat and despite the fact that we had drivers to carry our bags for the first time on the whole tour, we were slower than I had hoped, but we got to my mom’s house in Rockville, Md., where close to 40 people were waiting to welcome us to the Washington area.

The crowd included new MSA Coalition board member Philip Fortier (below, left) and MSA New Jersey founder Cynthia Roemer (below, right). Philip brought Tim’s Shoe, an important symbol of MSA awareness. (I’ll post a video explanation of that later.)

welcome home


We barely had time to recover before we had to be up at dawn the next morning to ride the final 23 miles to Capitol Hill in order to meet the Dysautonomia International bus, which brought dozens of people downtown from the group’s annual meeting near Dulles International Airport to lobby members of Congress. We celebrated with a victory shot on the steps of the Capitol.

Capitol victory pose It doesn’t matter how tired you are. The bike feels light at this point.

I’d be remiss if I didn’t thank our sponsors: Nestlé Waters North America, MapMyRide and Sportique Brands. (After all that riding, I had no saddle sores, thanks to Sportique’s Century Riding Cream. The joint & muscle gel, lip balm and foot spray came in handy as well.) You can check our routes on my personal MapMyRide page, and I’ll try to share them on the tour site when I get a chance. I’m far behind on my regular work as it is. :)

Also, thank you to everyone who donated in support of the tour. To date, we have raised about $9,000, including from the events in Columbus and Kettering, from money given to us along the way (my stepniece collected $19 from partygoers at my mom’s house), from checks sent directly to the MSA Coalition and from our Crowdrise page.

If you would like to donate, please visit the Crowdrise page, or send a check, made payable to the Multiple System Atrophy Coalition, to: 9935-D Rea Road #212, Charlotte, NC 28277. Please write “MSA bike tour” in the subject line.

Will we do it again next year? Stay tuned. If we do, we will stretch it out over at least a couple more days.