The following article appeared in Rye Brook’s Hamlet Hub. Click here to see the original story.
One of the best things about being an editor is the ability to share knowledge and educate the public about issues they may otherwise be unaware of. Today, I, along with 12 other individuals headed to Clay on the Port Chester/Greenwich border to raise money and awareness for Usher Syndrome Type 1F. I’ll be honest, prior to my friends’ Lynn and Jayna’s involvement, I had never heard of the syndrome. Let me back up a bit, Lynn and Jayna are friends with the parents of Zachary, a sweet 5 year old who was born with and suffers from Usher Syndrome. Rachel and Jared Root, the parents, organized spin classes around the country to raise awareness and funds for this syndrome which currently doesn’t have a cure.
These fundraiser rides took place yesterday and today all over the country and started off by showing riders a video of Zachary’s story. Zachary was born deaf and was a candidate for Cochlear implants which he received. Mom, Rachel, realized something else was going on beyond the lack of hearing. Upon further genetic testing, it was revealed that Zachary suffers from Usher Syndrome. It affects his vision to the point of night blindness right now but soon his vision will slowly deteriorate to the point of total blindness. In addition his balance will grow more and more difficult.
If you’re like me, you probably haven’t heard of this genetic syndrome which affects 4 in every 100, 000 people. It is classified as a rare disease without a cure. Sight. Sound. Cycle aims to change all that. Today’s ride was led by a phenomenal teacher, and was not only uplifting, it also inspired hope that with some effort and awareness and fundraising, a cure can be created. Please feel free to donate and learn more here and we hope to see you next year on a bike at the 2018 Sight. Sound. Cycle. event!
