Events
Description
Welcome back to the Eye Love Logan and Zoe 5k. We are so thankful for all the years of support for this cause. We have watched our kids slowly lose their sight over the years and are, for the first time, hopeful that a clinical trial focusing on this rare gene mutation will be starting in this next year or two. Below is a link to the announcement that was made this past fall in thanks to the funding by the Foundation Fighting Blindness, Odylia, and the RDH12 Fund for Sight. Thanks to your generosity, we have been able to raise over 3.3 million worldwide as a foundation and will be contributors to the research. We are hoping that this year will be our last big push to the finish line and would love your support.
Come run, walk, bid or just play with us at the Westminster Promenade Terrace in Westminster, Colorado. If you live in another state please run with us virtually. We have a Facebook page at eyeloveloganandzoe5k where we would love to see your smiling faces running.
If you don't think you can run or walk the 5k, please consider donating by simply clicking on the donate button on the top of this page.
RDH12 Families and Kids
Why run or donate?
Our 10 year old son, Logan, and our 8 year old daughter, Zoe, were diagnosed with a rare genetic mutation that results in a progressive loss of vision called Leber's Congenital Amaurosis (LCA). Logan and Zoe's specific LCA was identified by the Carver lab at the University of Iowa as being caused from a mutation along the RDH12 gene. As of now, there is no known cure for LCA caused by the RDH12 gene and those with RDH12 deficiency eventually go blind, typically in their late teens to early twenties
There is currently nothing that can be done for someone that has this diagnosis, but there is hope for gene therapy. This past year the FDA approved the first ever "medication/ gene therapy" for the treatment of one of the 27 known Leber's Congenital Amaurosis gene defects, RPE65. This has given us immense hope for the future for a cure for Logan and Zoe's gene.
Why support the RDH12 Fund for sight?
Since it’s founding, the RDH12 Fund for Sight has enjoyed significant success and growth. Our group now includes 30 children from 24 families and to date, has raised over 1 million dollars for RDH12 research to help all of the children with RDH12 LCA be cured of blindness.
With funds raised, the RDH12 Fund for Sight has awarded two grants to academic researchers, Jean Bennett at the University of Pennsylvania and Debra Thompson of the University of Michigan. We have also sponsored research at Moorefields in the UK, a Ph.D. student who is employed by RDH12 Fund for Sight to help advance work and numerous other studies underway internationally. But we have hit many walls in our battle to get this research to continue. Since this is a rare disease, there are only a few hundred people with this diagnosis. This means that, in order to realize this goal, the foundation must find a way to continue to provide the resources necessary to push this cure across the finish line. No commercial company will fund us as they will not make a profit off of us. That's right! Profit stand-in the way of our kids vision even though we have been told that our cure could be a slam dunk if the resources were dedicated to it. This leaves us no choice but to fight and raise money on our own. Research is not cheap and can cost many millions of dollars.
The RDH12 Fund for sight is a registered 501(3)(c) charitable foundation so all donations to the fund are tax deductible. The Fund does not pay administration fees nor maintain any employees which means all money raised goes directly to a cure. It is entirely supported by the parents of children with this disease who volunteer their time and love their children.
For more info on RDH12 see the website at: www.RDH12sight.org
Race Contact Info
If you have any questions about this race, click the button below.
TIMING
This event will be timed and those times can be used for other races including the Bolder Boulder. You will be given a Bib with race number and that is how your time will be reported the day of the race on-line.
Pictures from previous years starting line
kids fun run
Altitude Sports amazing story on our kids
Here are links to the amazing story that altitude sports did on Logan and Zoe this past year. We are so thankful to the Avalanche, Kronke Sports and altitude sports!!!
https://vimeo.com/user69730083/review/319996887/a8570fa3c3
https://vimeo.com/user69730083/review/319997013/83b0918b6c
Directions
Westminster Promenade Terrace behind the Westin Hotel in Westminster, CO
Like this page and invite your friends on Facebook.
Thank you! Your message was posted to Facebook.