Hope for a Cure for Everett’s Eyes

In September of 2021, our 5-year-old son Everett was diagnosed with CRB1 Retinal

Dystrophy, a degenerative retinal disease that causes poor vision and eventual

blindness. 

After we emerged from our initial shock and sadness, we started learning everything we could about the disease and how we could be Everett’s best advocates as his parents. 

Currently, there is no cure or treatment, but we discovered a small non-profit, Curing

Retinal Blindness (crb1.org) with the mission of funding research to treat CRB1 blindness. Amazingly, they secured the opportunity to partner with research teams at

Berkeley and Columbia for CRISPR / gene editing research to find a treatment for

CRB1. Their first fundraising goal is very aggressive - $3MM by the end of 2022. The

total research project is projected to last 10 years and cost $10MM for clinical trials, etc. CRISPR gene therapies are being successfully applied to treat other genetic eye

diseases, so we are hopeful this will help Everett in his teen years.

Everett is a very happy-go-lucky kid, and we’re so grateful to be his parents. He is

“legally blind”; 20/400 right eye and 20/200 left eye with glasses, but he still has a lot of vision worth saving and a long way to go before complete blindness.

Everett will be a kindergartener this year and will begin pre-Braille classes with a vision specialist as well as having special magnification equipment to help aid his vision. He is aware that his eyes are special and need extra help but he is not aware of eventual blindness as we feel this messaging is not developmentally appropriate. This is all new territory, so we sincerely appreciate your prayers and thoughts as we navigate this new journey as a family.

Would you please consider partnering with us to help find a cure for CRB1 and give Everett and other children hope? Donations in any amount to help fund this research are 100% tax deductible.