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Due to the current health situation we have made the hard decision to make this years Eye Love Logan 5k a virtual race. For the past four years this race event has been more than just a race for all of us, it has been a gathering of friends and family to celebrate our success in inching towards a cure for this life changing disease. The bad news is, we can't all play together, listen to music, and be with each other as a community. The good news is, that now we can share our fun and fundraising with everyone around the world who wants to join, without putting anyone at risk. Due to the current economic situation, our sponsorship has been minimal which means our fundraising has been drastically cut. We are hoping that you will all be able help us by safely getting some exercise in the safety of your home as well as spreading the word about this race with friends and family all over the globe. We would love to have runners from every state in the US and even some countries around the world.
Not only has this virus prevented us from having the physical race but it has also halted any research for a genetic cure. This means that clinical trials and a cure that were said to be a "slam dunk" are now sitting on the side lines. This is hard pill to swallow for families like ours who are trying to teach our visually impaired kids at home with a homeschooling set up that is only geared to kids with sight. We have amazing teachers working to make education accessible but it is a constant reminder of the fight our kids are faced with on a daily basis. It makes our hearts sad and more determined to find an answer. We plan on sending out yard signs to anyone who signs up in the local Colorado area. We would love if you would put it in your yard and try to encourage others to join. 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. 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.
Hop on a treadmill, get out on a trail or run on a track. We don't care how you do it but we want to see you and your family after you do do it. Please upload pictures and times of your victory on our facebook page and this website so we can all still celebrate together.
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 20 children from 17 families and to date, has raised 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.Questions?
This event is not timed. We are trusting in the honor system. After you successfully do your 5k please upload your results on our page and place pictures on instagram (#eyelovelogan5k) or facebook ( eyelovelogan5k). There may be some surprises for those who run fast ;)
From June 15 to July 4th, registered participants can go to this link and submit results!
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!!!
Like this page and invite your friends on Facebook.