Transforming Health Care through Innovative and Impactful Research

Ron Heffron's 7-year-old son, Bao, was diagnosed with Tuberous Sclerosis Complex (TSC) at 5 months of age. After coming to grips with this diagnosis, Ron and his wife chose to fight back on Bao's behalf. Their mission in life has become a mission of love - giving Bao the best chance to lead as normal a life as possible, which by Ron's own admission has not been an easy task. The first thing he and his wife did was to research the disease and various treatments, knowing they had to find a way to stop Bao's infantile spasms as soon as possible. They attended international research conferences, met with at least a dozen neurologists and neurosurgeons, and read more medical journal papers than Ron cares to remember. Ron and his wife found the best neurosurgeons in the country, and Bao underwent a three-stage tuber resection process at 13 months old, which was followed by another surgery at 22 months old. Before his second surgery, Bao could not walk. As Ron exclaims, "Imagine the shock on his surgeon's face when Bao walked into his office two weeks after the surgery!" Although Bao still suffers occasional seizures, they remain milder than those he experienced prior to his surgery.

Ron, who has served as a consumer member on the peer review panel from Fiscal Year 2008 (FY08) through FY10, says, "Having now served for three years in this role, I have come to know two very important benefits from this experience. First, even though it is from a consumer reviewer's perspective, I have learned to ask much smarter questions on behalf of the TSC community and on behalf of Bao. By seeing what directions the science is taking, it helps me set expectations and chart a course for Bao, with realistic expectations. Second, I have learned that this is the single most important thing I can do for my son and for all those suffering from TSC. The CDMRP program is extraordinarily well organized and executed."