Honoree Ross McFarland & "Team Ross" 2011
Our honoree, and the inspiration behind the creation of the Rosstoberfest Run, is 16-year-old Ross McFarland. Twelve 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 do.
Today, though, Ross has defied many of the odds for boys with DMD. Up until the ripe old age of 15, he was still able to walk and stand. Now, he has to rely on his power chair to transport him. Clyde, his service dog, trained to help him physically, is now mostly resigned to picking up dropped items and serving as a companion.
Ross has taken steroids daily since his diagnosis. He has participated in numerous therapies, including physical, occupational, speech, swimming, and therapeutic horseback riding. Initially these therapies were undertaken to prolong ambulation. Now, they are helpful in prolonging his life.
Ross has, in the past, taken part in several phases of a clinical trial for an experimental drug called Ataluren. He is once again taking this drug, having been allowed access to it through “compassionate use”. The FDA is in the process of determining whether the drug has enough clinical benefit, as it studies data from the first two phases of the clinical trial. Ataluren is an oral drug Ross takes three times per day and he currently undergoes blood tests at KUMC every 12 weeks. For more information on the clinical trial and PTC Therapeutics (the makers of Ataluren), please visit www.ptcbio.com.
Although DMD is the reason behind the Rosstoberfest Run, it does not define the young man that is our honoree. Ross is an amazing young man with a HUGE love for all things sports. He is particularly fond of Major League Baseball, but has a litany of sport topics he can converse about intelligently (and voluminously!). In addition, he will also know the weather forecast, as he loves to track weather too. He is rarely without a smile and will talk to anyone who will listen – this excludes his sister Gabby, 14 and brother, Milo, 10.
Ross and his family have lived in the College Hill area of Wichita for 14 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 McFarlands 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 the Rosstoberfest Run is a College Hill landmark – 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 and he currently attends Wichita Heights High School. In both schools, he has participated in a program for students with Asperger’s Syndrome, a form of autism. He manages the Heights baseball team and is a member of the Baseball Club and the choir. He attends as many school sporting events as his parents will take him to and is treated like a rock star by the students and faculty of Heights.
The Rosstoberfest Run is a natural progression for Ross’ love for sports and his parents interest in raising awareness of DMD and the work of Parent Project Muscular Dystrophy (PPMD). Ross’ dad, Robert, has participated in many Ironman competitions in Ross’ honor. His mom, Bev, has run numerous marathons to honor and raise funds and awareness for Ross’ cause. Additionally, there are friends, family and neighbors that have also run marathons for Ross, all of them training on the same streets of the Rosstoberfest route. We won’t ask you to run a marathon, but we need more people running for Ross.
Please, join Team Ross and run Rosstoberfest!