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"...it doesn't matter how hard you can hit. What matters is how hard you can get hit, and still keep moving forward!" My Story
On October 13th, 1994 at the age of 28, I was told that I would be 100% blind by the age of 50 and there was no hope that medical research would change that. Fast forward to 2011... Jeff Benelli running 92 laps At 45 years old, I am married with 2 young boys ages 8 and 10. I am legally blind with only 2 degree visual field. I have run 6 marathons in the top 7 % of my age that has instigated over $111,000 in funds and unmeasurable amount of awareness. We are taking possible cures into Phase I Clinical Trials Dec 2012 if necessary funding is in place. This is my only hope to keep some sight! My Nephew To make matters worse, I found out this past year that my 11 year old nephew also has this disease and will begin losing his vision in as little as 10 to 15 years. He is already suffering the early syptoms of night blindness and the stresses that come with. |
S P A C E R |
What is Choroideremia (CHM)? CHM (pronounced kor-oid-a-reemeea) is an extremely rare genetic disorder. In simplest terms, CHMers are missing one protein gene that keeps the rods and cones alive. CHM begins taking vision around the mid 20's until complete blindess around age 50. Though females may carry CHM, it is the males who suffer the vision loss. CHM is hereditary and passes with a 50% rate. Thus, once in a family, it riddles that family with blindness! How close is a cure? If the remaining estimated funding of less than $2,000,000 can be generated, we can stop CHM forever! Marathon Accomplishments I've run in 6 marathons. Every time I run, whether it be a training run or an actual race, I think about my disease and what I have lost and what I will lose in the years to come. I also think about how close we are to stopping any further progress if necessary funds can be raised. I put forth this energy with every gasp of breath and every stride. I believe it is because of this effort and the running success it's brought, that I've made numerous articles including Runners World and Competitor Magazine (see Media section). I was recently told that I'm presumed to be the 3rd fastest blind marathon runner in the country. I run alone, without a tethered guide. All I can see is bobbing heads and nothing else. I wanted no aide or support that might lessen my achievement. I want the world to realize my efforts in an attempt to inspire others to deem this cause worthy of supporting! CHM can be cured. CHM will be cured. But will it be in time to save some of my sight and the sight of my nephew and many other young boys his age? |
