I'm running the 125th Boston Marathon this October to raise urgent funds to directly support research that can preserve and bring back vision for those suffering from Retinitis Pigmentosa (RP), a genetic disease that has directly impacted my family for multiple generations.
3 years ago my brother Mike found out that he, like my grandfather before him, was slowly going blind due to RP. While his eyesight has suffered to the point that he can no longer drive, modern medicine has afforded him hope that he may be able to visually witness his children's weddings & graduations, something my grandfather unfortunately was never able to do.
Whether studies currently underway leveraging CRISPR to preserve his current level of sight or research into using stem cells to bring his eyesight back beyond its current level, the Inherited Retinal Disorders Service (IRDS) at Mass Eye & Ear is leading the way in finding a cure for RP. It was the founder of this group that was my grandfather's doctor for so many years and its current director, the doctor that is helping my brother today.
Every dollar raised will go directly to the IRDS at MEEI to support research that could bring back my brother's eyesight.
My grandfather never let his blindness affect how he lived his life. As a child, he would take my brother and I down to the marathon route every year to cheer on the runners from Mile 23, so I felt it fitting to use this race as a way to raise money for this cause.