Make Your Mark: MSA Tour Final Press Release

This press release goes out at 3 a.m. EDT Saturday morning

Cyclists to Ride from Chicago to Washington, D.C., to Raise Awareness for MSA and Funds for The Multiple System Atrophy Coalition

Riders will ‘Make Their Mark’ to salute their father and brother, who died from Multiple System Atrophy, a rare and terminal neurodegenerative disease.

CHICAGO, July 1, 2014 — Two cyclists will ride more than 850 miles this summer to raise awareness of multiple system atrophy (MSA), a rare neurological disease that took the life of a loved one.

Neil Versel and Malcolm Versel will bike from Neil’s home in Chicago to Washington, D.C., in memory of their father and brother, respectively. Mark Versel, of suburban Washington, died in May 2012 at age 68 due to MSA. To honor Mark, the tour is being called Make Your Mark: MSA Awareness Tour 2014.

Along the way, Neil and Malcolm will stop in the home towns of other families touched by MSA, which has no known cause, no effective treatments and is always fatal. The Versels will be spreading the message about this terrible disease, as well as raising money for The Multiple System Atrophy Coalition and related MSA organizations.

Make Your Mark: MSA Awareness Tour 2014 will begin on Friday, July 4, 2014 at 9 a.m. CDT at Addison Street and Lake Shore Drive in Chicago. It will conclude Monday, July 14, 2014, at Peace Circle, Pennsylvania Avenue at First Street, N.W., right by the United States Capitol, where riders will meet attendees of Dysautonomia International’s annual conference for the organization’s lobby day at approximately 9:20 a.m. EDT.

Other riders are welcome to join for the first leg, 46 miles to Hobart, Ind., in exchange for a minimum $25 donation to The MSA Coalition. Riders also are invited to ride the final two legs, from Hagerstown, Md., to Rockville, Md. (58 miles), on Sunday, July 13, and 23 miles from Rockville to the U.S. Capitol the following day, in exchange for a donation.

“The MSA Coalition is very excited to support this tour,” says Judy Biedenharn, President. “Multiple system atrophy is largely unknown to the general public, so this event will make a big impact in generating greater awareness. Neil and Malcolm have planned a very grueling itinerary, symbolic of the difficult journey that Mark Versel faced during his illness. We wish them lots of luck and look forward to following their progress in July.”

Dysautonomia International, a group dedicated to assisting people living with disorders of the autonomic nervous system — including MSA — will be hosting Dysautonomia Lobby Day on Capitol Hill Monday, July 14. Dysautonomia Lobby Day participants will be meeting with members of Congress to seek increased federal funding for research into MSA and other forms of dysautonomia, as well as insurance reimbursement for autonomic testing, which has become a problem with some insurers since last year.

Dysautonomia International President Lauren Stiles, Esq., notes, “We are delighted to have members of The MSA Coalition with us on Capitol Hill again this year. Individually, the different types of dysautonomia may be rare, but collectively, they are not rare at all. When we work together to have our message heard in Washington, it benefits everyone.”

Events are being planned for July 5 in Kokomo, Ind., July 7 in Kettering (Dayton), Ohio, July 8 in Columbus, Ohio, July 10 in St. Clairsville, Ohio, July 12 in Hagerstown, Md., and July 13 in Rockville, Md. All are home to families affected by MSA. See http://www.msatour.net/related-events.html for details.

A kickoff fundraiser is scheduled for July 2 at 6 p.m. CDT at Chuck’s: A Kerry Simon Kitchen, 224 N. Michigan Ave., Chicago.

Make Your Mark: MSA Awareness Tour 2014 is sponsored by Nestlé Waters North America, Sportique Brands and MapMyRide.

For more information about the cycling tour, please visit http://msatour.net, “like” the tour’s Facebook page https://www.facebook.com/MakeYourMarkforMSA or e-mail info@msatour.net.

For more information about MSA or to donate to The Multiple System Atrophy Coalition, please visit http://www.Multiple-System-Atrophy.org.

For more information about Dysautonomia International, please visit http://www.dysautonomiainternational.org.

 

The full itinerary is as follows, subject to change due to weather or road conditions:

Day 1, July 4: Chicago to Valparaiso, Ind. (62 miles), with a stop at an Independence Day celebration in Hobart, Ind., at mile 46.

Day 2, July 5: Valparaiso to Kokomo, Ind., home of several families affected by MSA (98 miles).

Day 3, July 6: Kokomo to Celina, Ohio (95 miles)

Day 4, July 7: Celina to Kettering, Ohio, home of MSA activists Frank and Susan Cervone (84 miles). LaRosa’s Pizzeria, 2801 Wilmington Pike, Kettering, will donate a portion of the day’s proceeds from guests who mention the MSA Tour to benefit the research of Dr. Charles Ide at Western Michigan University.

Day 5, July 8: Kettering to Columbus, Ohio, home of several families affected by MSA (85 miles). Logan’s Roadhouse, Easton Town Center, 3969 Morse Crossing, Columbus, will donate a portion of guest checks from 11 a.m. to 8 p.m. EDT, to the MSA Coalition Research Fund.

Day 6, July 9: Columbus to Cambridge, Ohio (84 miles)

Day 7, July 10: Cambridge to Waynesburg, Pa. (102 miles), with a visit to an MSA-affected family in St. Clairsville, Ohio, at mile 46.

Day 8, July 11: Waynesburg to Grantsville, Md. (82 miles)

Day 9, July 12: Grantsville to Hagerstown, Md. (98 miles). Meet the riders at Barefoot Bernie’s, 901 Dual Highway, Hagerstown, at 6 p.m. EDT, and the restaurant will donate a portion of guest checks to the MSA Coalition.

Day 10, July 13: Hagerstown to Rockville, Md. (58 miles). Welcome the tour to Mark’s longtime hometown with a celebration at Village Green Park, 401 Casey Lane, Rockville, inside the Fallsgrove development. The first riders should arrive shortly after 11 a.m. EDT, and most will be done by early afternoon. Others are encouraged to ride this leg, or join in Frederick, Md., for the final 30 miles.

Day 11, July 14: Rockville to Washington, D.C. (23 miles) for Dysautonomia Lobby Day at the U.S. Capitol.

 

About Multiple System Atrophy
Multiple system atrophy (previously known as Shy-Drager Syndrome) is a rare and fatal disorder with less than 15,000 Americans diagnosed and 35,000 undiagnosed at any given time. According to the National Institutes of Health, “Multiple system atrophy is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems (neurogenic orthostatic hypotension), combined with motor control symptoms such as tremor, rigidity and loss of muscle coordination. MSA affects both men and women primarily in their 50s. MSA tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. Currently no cure is available.”

About the Multiple System Atrophy Coalition
The Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of encouraging and funding research to find a cure. The Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community. For more information or to donate to The Multiple System Atrophy Coalition, please visit: http://www.Multiple-System-Atrophy.org.

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More plans are falling into place

We’re less than a week away from the start of the tour. There are a lot of moving pieces, but things are starting to fall into place for the beginning and end.

As previously announced, we’re having our kickoff fundraiser this Wednesday at Chuck’s: A Kerry Simon Kitchen in the Hard Rock Hotel, 224 N. Michigan Ave., Chicago. Chuck’s management has since agreed to up the donation to 20 percent of the proceeds from sales of the Iron Chef Burger, the Portobella Cap Sandwich and a specialty cocktail custom-designed for us, in support of the Multiple System Atrophy Coalition. We’ll be there starting at 6 p.m. CDT, but the offer is good all day if you happen to be downtown for lunch or immediately after work.

We’ve also settled on a starting point and time for the tour. <We’ll be assembling around 8:30 a.m. CDT for a 9 a.m. tour start near Addison Street and Lake Shore Drive, riding the lakefront trail to its end at South Shore Cultural Center (rest stop). We’ll then take South Shore Blvd. to the Burnham Greenway, ride around Wolf Lake into Indiana, pick up the Erie Lackawanna Trail and then the Oak Savannah Trail to Hobart, Ind., where we will celebrate Independence Day with a barbecue, featuring homemade ice cream. We will share the exact route with riders and supporters this week. (See http://www.msatour.net/related-events.html for an interactive map.)

If you’d like to ride or volunteer, e-mail info@msatour.net. We will need help with set-up, registration, handing out refreshments at two rest stops and transportation of some riders back to Chicago. Riders are asked to make a minimum $25 donation to the MSA Coalition.

On the back end, you are invited to ride with us the last full day of the tour on Sunday, July 13. We’ll get going from Hagerstown, Md., at around 8 a.m. EDT and ride 58 miles — almost all downhill — to Rockville, Md. If you want to stay over with us the night of the 12th in Hagerstown, we have secured a group rate of $70 plus tax for rooms with two queen beds at the Comfort Inn & Suites, 920 Dual Highway, Hagerstown. Call (301) 739-9050 to book, and ask for the MSA Tour group rate. (This offer is good for reservations made by July 8.)

Please also join us for dinner July 12 at Barefoot Bernie’s, right across the street from the hotel at 901 Dual Highway. The restaurant will donate 10 percent of our party’s checks to the MSA Coalition and offer free admission to those 21 and older to the nearby Cancun Cantina West.

Welcome the riders to the Washington area with a celebration at Village Green Park, 401 Casey Lane, Rockville, inside the Fallsgrove development. The first riders should get there around 11 a.m., and most should be done by noon.

We’re still in need of support drivers along the route. If you would like to drive with us for a day to carry our gear and assist in case of any problems, please get in touch.

We’ve also started receiving some sponsor products. Thanks again to Nestlé Waters North America, Sportique Brands and MapMyRide for keeping us hydrated, comfortable and on course.

Big day: Press coverage, Chicago kickoff event

Thursday was a big day for the MSA Awareness Tour. We got written up in the Kokomo (Ind.) Herald, in a story that mentions that we will be passing through town on July 5 and interviews some of the people we will meet while there. Kokomo is a town of just 55,000 people, and at least three people there currently have or passed away from MSA since 2010. With the average incidence of the disease about 4.5 per 100,000 worldwide, Kokomo residents are nearly 25 percent more likely than the general population to have this horrible condition. (Did I get the math right?)

That was our first taste of press coverage. There will be more. I was interviewed Thursday by a reporter for a neighborhood newspaper in Chicago for an article that is supposed to run next Wednesday. I have another interview scheduled next week by one of the “hyperlocal” online sites that covers neighborhood news. I and supporters in cities along the route are continuing to reach out to bigger outlets — Chicago and Washington are pretty huge media markets after all, and Columbus, Ohio, is hardly a small town. If you know any print, broadcast or digital media that might be interested, the tour press release is at http://www.prweb.com/releases/prweb11867476.htm.

For those of you in Chicago, we’ve got a kickoff fundraising event planned at my first choice of venues, namely Chuck’s: A Kerry Simon Kitchen in the Hard Rock Hotel, 224 N. Michigan Ave. Las Vegas-based chef Kerry Simon, called the Rock ‘N Roll Chef by Rolling Stone Magazine, is an Evanston native who is battling MSA himself and has become an outspoken advocate for the cause.

During this event, Chuck’s will donate 10 percent 20 percent of the proceeds from sales of the Iron Chef Burger, the Portobella Cap Sandwich and a specialty cocktail custom-designed for us to the Multiple System Atrophy Coalition. We’ll be there starting at 6 p.m. CDT, but the offer is good all day. (It’s called the Iron Chef Burger because Simon beat Cat Cora on “Iron Chef America” in 2005 with the recipe.) You can RSVP on our Facebook event page, or just show up and mention you’re supporting the MSA Tour.

Chucks event graphic

Free nutrition counseling for those fighting MSA

I’ve been in touch with Chef Kerry Simon‘s people in the last few days, and one told me of Malorie Davis, a friend who’s a holistic nutrition counselor and chef in Southern California. A couple of weeks ago, Davis posted the following on Instagram:

In honor of @kerrysimon and #fmsa I WILL BE DONATING ALL NUTRITION COUNSELING SERVICES TO ANYONE FIGHTING MSA FOR ONE YEAR! Studies show that an #antiinflammatory and mostly #vegetarian diet can help reduce the symptoms of #msa AND slow it’s progression! I offer Customized programs and 3 months of counseling. Anyone who is fighting #msa and might be interested, email me for a consultation! And PLEASE! SPREAD THE WORD! #msa#msaawareness#nutrition#diet#holistichealth#wellness#dairyfree #donation#imheretohelp

I’ve been asked to help get the word out. Consider it done. (Disclaimer: This post is purely informational. I don’t know enough about the science behind MSA to understand the role nutrition plays, and I don’t know Davis personally.)

If you want to contact Davis, visit her blog or e-mail her at mandmwellnessca@gmail.com

Regarding the #fmsa hashtag above, that’s for Simon’s Fight MSA effort. The F could stand for another word, as this photo of Simon, right, with MSA activist Lily Shih, illustrates.

Lily Shih Kerry Simon

Here’s the official logo for the MSA tour

Thanks to Margie Straiko of Straiko Design for creating this, the official logo for Make Your Mark: MSA Awareness Tour 2014.

BICYCLE GRAPHICS (low res)If you want to donate to the cause, please click here. If you’re interested in helping out, either as a sponsor (still looking for support drivers), a rider on the first day in Chicago (July 4) or the last full day, in Maryland (July 13), or as a volunteer for the first and last legs, please contact info@msatour.net.

We have a tour logo/map!

One element of the tour logo is done, a map showing key stops on the route. You’ll notice a lot of purple, which is the color of MSA awareness in North America.

FINAL MAP (low res)
I should have the main logo in a day or two. This is getting real.

Meantime, if you go to the tour web site, you can see updates on the two Ohio events planned so far, with coupons ready to download.

Stay tuned for details on the Chicago kickoff fundraiser on July 2.

Headwinds build character

Stuck at a railroad crossing during the Tour de Cure.

Stuck at a railroad crossing during the Tour de Cure.

I’ve heard from veteran cyclists that headwinds build character. I know they build strong legs, and I’ll need that for the upcoming tour, and, in some ways, they simulate climbing, something that’s hard to do here in the flat Midwest. I’ll, of course, be climbing the Appalachians next month.

I’ve had quite a lot of experience with strong headwinds lately, at yesterday’s Chicagoland Tour de Cure (a ride supporting the American Diabetes Association), and a week earlier at the Udder Century through rural Northern Illinois and Southern Wisconsin. I picked the longest courses, 100 miles, each time.

The Udder Century was on what turned out to be a pretty hot day, close to 90° F (32° C), and winds were strong. That’s why I hit a top speed of 31.5 mph (50.7 kph) early on, and I completed Mile 15 in 2:30. I don’t know if I’ve ever ridden a mile that fast before, and it felt awesome.

But the thing about a tailwind in the morning when it’s cool, you get a headwind on the way back when it’s warm, and it’s tough. I really slowed down after about mile 65, and approaching one rest stop later in the day, I was almost out of fluids when it started raining for about 10 minutes. The rain was exactly what I needed to cool down until I could refill my bottles. (I always carry two, one with water and the other with electrolyte drinks.)

I have to say I got a pretty serious workout, despite the flat course, and that’s exactly what I needed.

It was cooler yesterday for the Tour de Cure, but I struggled more. Cool air was blowing in from the northwest, and the wind was howling at times. I sure felt in early, as we headed west, then north. But the payoff for enduring a headwind on the way out is a tailwind on the way back, when you’re more tired. Or at least that’s how it’s supposed to be.

It really felt like I had the wind at my back for only about 20 miles or so. The fact that I had only one sub-3:00 mile, on mile 55, bore that out. There was more climbing for sure, but nothing like I’ll experience during the MSA Tour. I do have an ace in the hole, however: a “granny gear,” a crankset with three chainrings. (Most road bikes only have two chainrings attached to the crank.) I think I’ve used it twice since I’ve owned the bike, and I didn’t use in either recent ride.

You’ll see a bunch of slow laps on this graph. The Tour de Cure had more rest stops than most century rides I’ve done, and I did take advantage of all of them. On the second mile, one teammate had a flat tire, and about a dozen of us stopped and waited. (We, of course, got separated as the day went on.)

On mile 49, my wheel caught the edge of the pavement on a rural two-lane road, and I fell. I got away with just a minor abrasion above my left eye, and today that eye is black and slightly swollen. I’ll live. Swollen or not, I have to keep my eye on the goal, which is riding 850 miles in 11 days to raise awareness of multiple system atrophy.

As always, I rode with the letters “MJV MSA” on my left sleeve, in tribute to my dad, Mark J. Versel.