Honoree Ross McFarland & "Team Ross"
Our honoree, and the inspiration behind the creation of the Rosstoberfest Run, is 14-year-old Ross McFarland. Ten years ago and just before Ross turned four, he was diagnosed with Duchenne muscular dystrophy (DMD). As other little children ran out to recess, climbed on the monkey bars, or played a game of kickball, Ross could not participate. His young body just would not let him do what, perhaps, his soul was aching to.
Today, though, Ross has defied many of the odds for boys with DMD. Though he can no longer climb stairs and relies on his service dog, Clyde, to help him should he fall, he is still able to walk, although laboriously.
Ross has taken steroids daily since his diagnosis. He has participated in numerous therapies, including physical, occupational, speech, swimming, and therapeutic horseback riding, to prolong his ambulation, and, more importantly and ultimately, his life.
Ross was one of 26 boys nationwide to take part in a clinical trial for an experimental drug, PTC124. The drug showed lots of promise in halting the progression of DMD, so further trials were planned. He started an extension of this same trial in January, 2009, anticipated to last for two years. The drug, now with the generic label Ataluren, is an oral drug Ross must take three times per day.
Ross travels to Cincinnati Children's Hospital quite regularly for extensive testing. It is hoped that at the end of the two years, enough data will have been gathered to convince the FDA that Ataluren is indeed working. For more information on the clinical trial and PTC Therapeutics (the company producing the drug), please visit www.ptcbio.com.: www.ptcbio.com/ptc124_summary.
Though all of the above is important information, and DMD is the reason we’re here, it’s kind of like asking a grown-up, “Where do you work?”. It doesn’t really tell you much about that person, in this case, Ross. He is an amazing young man who LOVES Major League Baseball with a passion for the Detroit Tigers in particular. He can most likely tell you anything you’d like to know about them. He is fascinated with the science of space and, as is typical in many families, can be a pain in the you-know-what to his sister, Gabby, 12 and brother, Milo, 8. He is rarely without a smile and will talk to anyone who will listen.
Ross and his family have lived in the College Hill area of Wichita for 12 years. They consider themselves fortunate to have been able to renovate their home for Ross’ changing needs, as opposed to moving from the old, charming, neighborhood they have grown to love. It is a community unto itself, with most neighbors knowing and caring for each other. The McFarland's find continued support from the College Hill locals, including Blessed Sacrament parish, where the kids have attended school. And that last hill you’ll climb at the end of Rosstoberfest Run – it’s the same one you’ll find all the neighborhood kids sledding down every snowy winter.
Previously Ross and Clyde attended Brooks Middle School where Ross participated in a program for students with Asperger’s syndrome, a form of autism. This year Ross is a Heights Fighting Falcon and he's making new friends in the halls of a fine city High School. Ross is interested in the Baseball Club, quoting stats about former Heights standout, Shocker baseball, and NY Mets player Mike Pelfrey. Ross is also keeping tabs on the football squad. He's hoping the will do well this year in City League competition, despite the loss of some talent. If you like sports, Ross is your guy.
The Rosstoberfest Run is a natural progression for Ross' love for sports and his parents interest in raising awareness of DMD and the work PPMD is trying to accomplish through running. Ross’ dad, Robert, has participated in Iron man competitions in Ross’ honor (most recently August 29, in Louisville, KY.) His mom, Bev, has run numerous marathons to honor and raise funds for her son and his cause. Additionally, there are friends, family and neighbors that have also run marathons for Ross, all of them training on the same sometimes cobble stoned streets of the Rosstoberfest route. Quite simply, we need more people running for Ross.
Join Team Ross. Run Rosstoberfest!