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.
The last year has been an emotional rollercoaster for our family. We originally had two companies racing against each other to get a clinical trial started. We felt such hope. We were going to Pennsylvania once a year and Michigan every 6 months for the pre clinical study/enrollment.
As you know from last year we found out that the company in Pennsylvania lost its funding due to investors pulling out. Because of that, we decided to do the 8th Annual Eye Love Logan and Zoe again last minute last year. Thanks to all your support we raised over 50K. We have now signed contracts with the company to become partial owners of the current research and donated 2 million of our raised money to keep things moving. This will keep the animal studies going and start the FDA approval process. While that is exciting it means that our account is empty and we need to fill it back up or find another investor to then move into clinical trial which costs a few more million.
We also found out a month ago that the Michigan study we were going to bi-annually is no longer being funded by Jenssen Pharmaceuticals so our trips were cancelled. Miera is trying to find another investor to keep the ball rolling but chances are not high in the current economy.
We hate that we keep asking you all for help but you have always shown up for us. We are honored and humbled by you all. Thank you for the love.
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
Why run or donate?
Our 13 year old son, Logan, and our 11 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
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.
On a Podcast
Last month i had the pleasure of joining one of my amazing neighbors on her Bad Ass Mom's podcast to talk about the kids and our journey to this point. If you are interested listening to it please click the link below:
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
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