Curing Retinal Blindness Foundation

Update: This giving season, we are raising money for a Lecia Thunder Microscope that will provide the key to faster, more effective research for our team at UPenn! This state of the art microscope combines advanced imaging capabilities with speed and efficiency. Help us light the way for a cure for Everett and other individuals living with CRB1 retinal disease and blindness.

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.

Help Us Fight Retinal Blindness!

Hi there!

We are a father-and-son team from China, and we need your support. Five years ago, we discovered that my son Lionel was born with a rare retinal eye disease called CRB1. This disease limits Lionel's vision to just 15%, and without a cure, his eyesight will eventually deteriorate to complete blindness. But we refuse to give up hope.

Lionel and I compete and complete large challenges to raise awareness for children with low vision and to fund research for curing retinal blindness worldwide. We also aim to inspire a love for the great outdoors.

To read more about our past adventures, current endeavors, or to learn more about our cause, please visit puthopeinmotion.org.

Thank you for your support!