Joe Brenton is planning to run in honor of his son Ryan and is trying to raise money for NF (neurofibromatosis).
You can help by donating or joining his team of “Undie-Clad Runners”. Your donationwill provide critical funding that will allow for treatments, clinical trials and ultimately will fund the research to find a cure for NF.
Together, we can be the difference in the lives of children like Ryan and help #endNF.
More information about his son Ryan and Neurofibromatosis:
Ryan is a sweet 8-year-old boy from Duncansville, PA who was diagnosed with NF when he was 1 year old. Neurofibromatosis is a genetic disorder that causes tumors to grow on and in brain and spinal cord. Most of the time the tumors are benign. NF can also affect bone and muscle growth.
Shortly after this diagnosis, an MRI revealed that he had scoliosis, or curvature of the spine, which is a common complication of NF. Before his 2nd birthday, Ryan’s spine worsened and he needed a cast that covered his torso to attempt to stabilize his spine. His cast was applied in an operating room under anesthesia. The cast needed to be changed every 8 weeks. This meant no baths in a bathtub and no swimming, but it didn’t slow Ryan down and he was much happier.
Eight casts later, Ryan’s spine continued to worsen. Just before his 4th birthday, he had surgery and titanium growing rods were screwed to his spine to stabilize it. After surgery, Ryan was fitted for a brace, his “turtle shell”. He never complained about his surgery, recovered quickly, and felt much better once he healed. Since then, Ryan had 3 more surgeries (once every 9 months) to lengthen the rods. When he outgrew those rods, he required another major surgery, but with exciting news – new technology was available. Ryan was the first patient at Children’s Hospital at UPMC to get MAGEC rods – growing rods with magnets in them. With this new technology, lengthening no longer requires surgery, it is achieved when a powerful handheld magnet is held next to Ryan’s implanted rods. This can be done in the orthopedics office and is painless. Ryan had to learn to walk 4 different times.
Ryan is an avid hockey fan. From the time he was born Ryan has spent many hours in rinks watching his brothers play hockey. This year Ryan has started playing sled hockey with the Johnstown Sitting Bulls! Ryan is fascinated by time and calendars, often correcting others if they estimate the time instead of precisely stating it correctly.
Ryan may have NF…. but NF doesn’t have him!
Join in and take part in the best, craziest thing you’ve ever done. All proceeds benefit the Children’s Tumor Foundation and neurofibromatosis research.
For more information please click here!
Joe Brenton 814-931-4535