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We were told there was nothing we could do about it. Now, we have every reason to hope, if we stand together.
READ OUR STORYHow We’re Going To Beat Childhood Blindness
What is Retinitis Pigmentosa (RP)?
Retinitis pigmentosa (RP) can be caused by many conditions. Luke’s condition is caused by Bardet-Biedl Syndrome (BBS), which affects multiple organ systems, including the eyes. There is a slow, progressive loss of vision until many BBS patients become blind in their teenage years.
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Now We're Funding Clinical Trials
The medical research involved in vision saving treatment and restorative therapy is advancing rapidly. This is excellent news! However, funding is significantly limited. Private funding, such as the money we raise, remains the main driver for much of this innovation. Your support is vital to saving children’s vision.
We Have the Best Helping
Axovia Therapeutics is working on Luke’s exact condition
They have completed animal studies and are poised to begin human clinical trials. However, they need additional funding in order to advance. It is uncommon for rare disease research to get government funding or funding from private pharmaceutical companies. Thus, the burden often falls on non-profits and philanthropists to fill in the gap between research and a cure. This is the difficult task we have undertaken.
We're supporting sight-saving clinical trials
We’ve set up our non-profit to minimize expenses and support Axovia Therpauetics through philanthropy. They are the only team in the world developing a therapy for retinitis pigmentosa due to BBS-1, and the potential clinical trial is planned to be a joint trial in the UK and US. We have advocated with researchers at Mayo Clinic as a potential clinical trial site. A similar gene therapy, Luxturna, is FDA approved to treat retinitis pigmentosa due to Leber congenital amaurosis. Axovia’s treatment uses a similar gene therapy model with some minor changes. With each successive gene therapy treatment that is successful, it becomes easier to develop treatments for more genetic subtypes and thus treat a wider patient population. *We have NO financial relationship with Axovia, and we intend to support their work through typical philantrophy and grants.
Elevating the Rare Disease Community
With your help, we can streamline the FDA approval process for rare diseases, which is incredibly time-consuming and expensive. Axovia is targeting BBS-1 today, but our success will elevate the entire community in the near future. It’s very important to have these individual wins because, without a proven model, we wouldn’t be where we’re at right now. This treatment is ready to go, and the next step we’re funding is human trials.
How You Can Support
DONATE
Every donation, no matter how large or small, makes an impact. The efficiency of our mission to support clinical research makes every dollar count.
GIVEAWAYS
Donate and help fund life-saving research for children. Your donation enters you into giveaways like the 2023 Beast Mode Adventure Van.
VOLUNTEER
Create your own events or help out at one of ours! Be a part of our operations, write letters to donors, or help solicit donations: the possibilities are endless.
Meet the Team
We founded the nonprofit when we found out our son has a rare genetic condition and is slowly going blind. But that really only scratches the surface in terms of our motivation. Since learning of Luke’s diagnosis, we have become strongly connected to the rare-diseases community. While rare diseases are actually not unusual, with more than 7,000 diseases classified by the FDA as rare, each one individually often affects only a small number of people. Thus many rare diseases don’t receive enough attention and resources to help fund research for adequate treatments or even possible cures.