Current Fundraisers
You can make an impact on saving childhood eyesight by entering our giveaway fundraisers.
Win a Baja LX Adventure Truck + $85k Cash!
🚙 Rossmönster Baja Build Camper on a Ford F350 Super Duty + $85k cash - or - $200k cash alternative
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Overland Tacoma + Voyager Xpedition Trailer!
🏕 Custom overland build Tacoma, Voyager Trailer, and $35k cash
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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
We're supporting sight-saving clinical trials
We’ve set up our non-profit to minimize expenses and support sight saving research through philanthropy. Our current target is supporting a therapy for retinitis pigmentosa due to BBS-1. A similar gene therapy, Luxturna, is FDA approved to treat retinitis pigmentosa due to Leber congenital amaurosis. This therapy 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.
Elevating the Rare Disease Community
With your help, we can fight to streamline the FDA approval process for rare diseases, which is incredibly time-consuming and expensive. We want to ensure access to therapies for even the most rare diseases. With each successive new therapy that advances, this opens the door for new therapies. We plan to advocate with regulatory agencies to help enforce the need to continue advancing rare disease approval pathyways.
How You Can Support
GENERAL DONATION
Every donation, no matter how large or small, makes an impact. The efficiency of our mission to support clinical research makes every dollar count.
FUNDRAISERS
Enter to win one of our vehicle giveaway fundraisers. Your tax deductible donations give you a chance to win an amazing prize, and support sight-saving research.
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.