A Race Against Blindness - Nonprofit funding sight-saving research

Our goal is to advance therapies for pediatric inherited retinal diseases. Our current mission: we are fundraising for a new gene therapy for RP/BBS1 - a rare but devastating cause of childhood blindness.

You can make an impact on saving childhood eyesight by entering our giveaway fundraisers.

Luke’s story of seeing the world before losing more vision was featured on GMA, helping propel our mission to the national level.

Why We Started this Foundation

Luke is 10 years old. He is a sweet, gentle, and big-hearted boy. If we do nothing, Luke will slowly lose his vision by the time he is in his teens. And with that will come the loss of many of the activities and things he currently knows and loves: riding a bike, playing with Pokémon cards, competing in karate, or building Legos. Imagine the fear and suffering you would feel if that was your reality.

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’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.

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.

Every donation, no matter how large or small, makes an impact. The efficiency of our mission to support clinical research makes every dollar count.

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.

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.

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.