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Welcome back to the Eye Love Logan and Zoe 5k. We are so thankful for all the years of support for this cause. A few months ago, we had such hope for the future of clinical trials. We had two major companies telling us that they were on track to start clinical trials as soon as the first months of 2024. We felt like we were finally on the path to a cure. We even decided to not do the race this year and to travel to show the kids the world while their sight was still somewhat intact.
Unfortunately, last week we received news that the trials were being put on hold for an undetermined amount of time due to lack of funding. With the state of the economy right now and the lack of money to be made from our rare gene they were unable to secure funding. This left us completely defeated as a foundation, parents, and patients. So, we are back to funding the research ourselves. The amount of money we need is hard to swallow (around 10 million) but every bit will help. All the money we have raised in the past is now going to the work (over 2 million). We will not give up for the sake of our kids who are losing their sight.
Please help us get to the finish line!
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
Our 12 year old son, Logan, and our 10 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. 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 300 people around the world and has raised over 3 million dollars for RDH12 research to help all of the children/adults with RDH12 LCA be cured of blindness.
With funds raised, the RDH12 Fund for Sight has awarded many grants to academic researchers including , 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
If you have any questions about this race, click the button below.
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.
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!!!
Westminster Promenade Terrace behind the Westin Hotel in Westminster, COOpen in External Application
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