San Jose Rock ‘n’ Roll Race Joins to Help Find Cure to Ulrich Congenital Muscular Dystrophy
A group of runners from Los Altos, California are joining efforts to help raise funds to support an eight year-old girl who suffers from Ulrich Congenital Muscular Dystrophy (CMD), a debilitating disease that confines her to a wheelchair and gives her an average life expectancy no longer than young adulthood. Due to the little that is known about the disease and the willingness to support research, Sophie’s father, Andrew, is leading the fundraising team for the San Jose Rock ‘n’ Roll Half Marathon & 10K.
On October 4th and 5th, the San Jose Rock‘n’ Roll race will join runners on a charity event to help fundraising to support research to find a cure for CMD. Runners, or walkers, may choose between a half marathon or a 10K, and the organization of the event is also providing preparation teams. Runners must register to participate in the event on the website of the event here, up until September 28th, and must be healthy in order to avoid medical incidents. However, people who want to help but who cannot participate can contribute to the cause with the fundraising team.
Sophie faces the challenges of the disease every day. However, her friends and family report that she doesn’t let CMD get in the way of what she wants to do, and goes about her day with a positive spirit. “I quickly learned the extent of Sophie’s muscular fragility: opening and closing pen caps and lunch containers, never being afforded the privacy we all take for granted in the restroom and the inability to play with her peers on the playground,” told Sophie’s personal aide, Olivia Drobny, who worked with the girl at a design camp last summer, to the Los Altos Town Crier.
Drobny said that Sophie has amazing willpower and that during the camp “she participated in games like Capture the Flag, maneuvered the classroom so that she could use a sewing machine just like everybody else, took part in arts and crafts and became friends with almost everyone she met.” “It is rare to come across a person who can change your perspective and turn your bad day into the realization that everything really is OK,” Drobny added.
Despite the girl’s will, the family knows that if researchers don’t make any progress in finding a cure for the disease, Sophie may have a short average life expectancy, and that “without a treatment or cure, it is likely that respiratory failure will wilt the dazzling flower she is,” Drobny said. It is for this reason that they are participating in the San Jose Rock ‘n’ Roll Half Marathon & 10K, and have also created the website SavingSophie, which can be visited here.