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.
Chicago, IL (PRWEB) July 04, 2014
Two cyclists begin their ride of more than 850 miles today, the 4th of July, to raise awareness of multiple system atrophy (MSA), a rare and terminal 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 begins today, 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 proud to support the 'Make Your Mark' tour," says Judy Biedenharn, President of The MSA Coalition. "Multiple system atrophy is under recognized by the general public, so this event will make a big impact in generating greater awareness and raising funds for research. Even before the ride has started the Versel’s have raise more than $3,300 For The MSA Coalition on CrowdRise. Neil and Malcolm have planned a very grueling itinerary, symbolic of the battle that Mark Versel faced during his fight with MSA. We wish them a safe journey and look forward to following their progress over the next ten days.”
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 was held on July 2 at Chuck's: A Kerry Simon Kitchen, 224 N. Michigan Ave., Chicago, IL.
Make Your Mark: MSA Awareness Tour 2014 is sponsored by Nestlé Waters North America, Sportique Brands and MapMyRide.
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.