More than 10 million Americans are affected by diseases such as retinitis pigmentosa and age-related macular degeneration that cause blindness. Alarmingly, with an aging population that number is expected to increase 50 percent by 2020.
While many of us have never heard of these diseases, let alone understand their causes and effects, the possibility of their impact on our lives or the lives of those around us is significant. Here, in neighborhoods across Boulder, people of all ages meet the challenges of life with blinding diseases every day.
After being diagnosed in 2004 with cone-rod dystrophy, which causes color and night blindness, and will eventually result in the loss of most of my vision, I tried to not let my diagnosis define me. I met people who had greater sight limitations than mine, doing amazing things.
Their stories gave me the strength to confront my retinal degenerative disease, and not let it determine my course. I began competing in Ironman triathlons, and eventually XTERRA off-road triathlons as well, to fight back against the disease and push myself not to be scared.
While I compete just for the thrill of racing, the success I’ve had in these races – with multiple top placements in my division – has helped give me confidence. I realized I could channel my energies to help others and founded Race To Cure Blindness, to help fund research for treatments and cures to retinal degenerative diseases like mine. The stories of people with limited vision who continue to lead rewarding lives inspired me to write “Eye Envy,” which I hope will give others strength as well. I am determined to raise awareness about eye diseases with everything I do, and am heartened that my efforts can have an impact.
For the first time in history, there is real hope for restored vision for people affected by retinal diseases. Recently published results from a breakthrough study funded in part by the Foundation Fighting Blindness, show that gene therapy restored significant vision in five children and seven adults who were previously blind due to a severe form of retinitis pigmentosa, a blinding genetic disease which affects people from birth.
By injecting a missing gene directly into the back of the eye, patients experienced dramatic improvements in visual acuity, peripheral vision and light sensitivity. One of the trial’s youngest participants, a nine year old boy, has experienced some of the most striking results, regaining his ability to ride his bike, play baseball and read the chalkboard in class. When asked what was best about his restored vision, his response was simply, “colors.” With a variety of ongoing clinical trials, this breakthrough sets the stage for the use of gene therapy in many more retinal diseases moving forward, with hope for further success.
This trial would not have been possible without the essential financial support provided by the Foundation Fighting Blindness and other funding organizations. Non-profit organizations often provide the start-up venture philanthropy capital necessary to begin new research not funded by the government.
With federal funding for medical research limited to supporting studies with proven results, unexplored research receives little to no funding. The potential for new breakthrough research can therefore be very limited by lack of initial funding.
However, the seed money most frequently provided through venture philanthropy allows scientists to investigate uncharted territory. In essence, venture philanthropy funding is the catalyst that can drive research to widespread funding from federal sources, such as the National Institute of Health.
Each of us has the opportunity to play a pivotal role in such venture philanthropy, whether by investing our time as volunteers or our dollars as funders. I plan to continue racing and helping to raise funds for the Foundation Fighting Blindness and their critical sight-saving research.
I hope you’ll join me in finding a cause that you are passionate about and pursue it. Our involvement and dedication to non-profit organizations that offer support for medical research is critical. Now, more than ever, supporting early research can significantly impact the lives of our neighbors, friends and families today and for generations to come.
Michael Stone lives in Boulder. EDITOR’S NOTE: This is an online-only column and has not been edited.
