Riders will ‘Make Their Mark’ to salute their father and brother, who died from Multiple System Atrophy, a rare and terminal neurodegenerative disease.
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
Neil and Malcolm have planned a very grueling itinerary, symbolic of the difficult journey that Mark Versel faced during his illness with multiple system atrophy. We wish them lots of luck and look forward to following their progress in July.
Make Your Mark: MSA Awareness Tour 2014 will begin on Friday, July 4, 2014 along Chicago’s lakefront, and will conclude Monday, July 14, 2014, at the United States Capitol. 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 Capitol Hill in Washington 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, Ohio, July 8 in Columbus, Ohio, July 10 in St. Clairsville, Ohio, and July 13 in Rockville, Md. All are home to families affected by MSA.
The riders are currently looking for sponsors to defray the costs of the tour and raise additional funds for MSA research and support. Sponsors may have their logos displayed on rider jerseys, tour T-shirts, a rider support vehicle or at local events.
For more information about the cycling tour, please visit http://MSAtour.net and “like” our Facebook page at https://www.facebook.com/MakeYourMarkforMSA.
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).
Day 5, July 8: Kettering to Columbus, Ohio, home of several families affected by MSA (85 miles).
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)
Day 10, July 13: Hagerstown to Rockville, Md. (58 miles).
Others are encouraged to ride this leg, or join in Frederick, Md., for the final 30 miles.
Day 11, July 14: Rockville to Capitol Hill, Washington, D.C. (23 miles) for Dysautonomia Lobby Day.
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.