Brothers, with CRB1 Defect, Beat Blindness with Biking Events

Michael and Mitchell, two brothers with CRB1 (Leber's Congenital Amaurosis) Retinal disease.

Michael and Mitchell are blind due to the CRB1 gene of degenerative retinal disease (Leber’s Congenital Amaurosis, Retinitis Pigmentosa or cone-rod dystrophy). Although they have less than 10% of the vision that a “regularly sighted” person has, they give every day 100%… and then some! Michael is [...]

Bardet Biedl Syndrome Robs 13 year Old Kaylin of Her Vision But Not Her Spirit

Kaylin suffers from Bardet-Biedl syndrome and is legally blind from her rare disease

Kaylin is 13 years old and has Bardet-Biedl syndrome (BBS). BBS is a complex disorder that affects many parts of the body including the retina. Individuals with this syndrome have a retinal degeneration called Retinitis Pigmentosa (RP). RP is a group of genetic disorders that [...]

Genetic Form of Retinitis Pigmentosa with CRB1 Gene Mutation Afflicts 8 Year Old Gracyn

Gracyn is battling Retinitis Pigmentosa and has hope in her genes!

My daughter Gracyn Smith is 8 years old and was diagnosed with Retinitis Pigmentosa (RP) with a CRB1 gene mutation at the age of 5. Retinitis pigmentosa is an inherited, degenerative eye disease in which there is damage to the retina. The retina is the [...]