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We are thrilled to announce that we have just been given permission to have the Eye Love Logan and Zoe 5k this year in person!!! So keep wearing those masks so we can all be together and celebrate. :)
So, for those of you who want to come run with us please sign up and encourage others to join. You can still run virtually if you are not ready to break away from quarantine ( we get it).
Over the past year research has not been moving much at all. Unfortunately, we lost some progress from the labs shutting down in England but we have also had a chance to gather more supporters and families and keep pushing. The Foundation Fighting Blindness is thinking about funding our study, we are now funding a PhD student to do research that we will own ( in the past we have lost research we have funded because others have owned it and refuse to share), and we are also debating having a company who fights for rare disease to work for us- so now more than ever we need money to keep this ball rolling.
The quarantine has been a struggle having legally blind kids do on-line learning (It is fairly hard to learn braille online). We are happy to have them back in school but are more than ever motivated to find a cure. Seeing our kids struggle in school has been humbling and hard.
We still plan on putting out yard signs to anyone who signs up in the local Colorado area until we are out of them. We would love if you would put it in your yard and try to encourage others to join. For those of you who will be running on the 22nd of August with us virtually, we would love to see pictures of you crossing the finish line and/or posing with your sign, or even a neighborhood filled with signs on the eyeloveloganandzoe5k facebook page. The more education and spotlight we can put on this disease, the faster we will get across the finish line, if not for my kids, for others who still have time before their sight is gone.
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.
This is a rare disease that science will not fund a cure for as it is will not be profitable for them. This means, as parents, we are on our own to raise the money and fight for a cure. Thank you so much for your kindness!!!
RDH12 Families and Kids
Our 9 year old son, Logan, and our 7 year old daughter, Zoe, were diagnosed with a rare genetic mutation that results in a progressive loss of vision called Lebers 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. With these funds, they have successfully developed a gene therapy for RDH12 LCA. This work could potentially be available for use by our children in 1 short year. 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!!!
Any place you wantOpen in External Application
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