Archives

A $100,000 donation from Sofia Sees Hope will support research into restoring vision for patients diagnosed with Leber congenital amaurosis (LCA). The grant will also provide access to genetic [...]

Mikayla Larson, a 30-year-old mother living with a rare inherited retinal disease (IRD) called Leber congenital amaurosis (LCA) wants to reassure children living with the same disease that [...]

By Angélica Bretón Morán I am 22 years old and I have LCA. My name is Angélica Bretón Morán, I am from Mexico, I am 22 years old and I […]

In the sometimes-isolating world of rare inherited retinal diseases (IRDs) such as Leber congenital amaurosis (LCA), another option exists to help bring people together – support by telephone. [...]

A revolutionary genetic treatment could improve the vision of 5-year-old Maverick Johnston, but his mom first wants to know more about the side effects and capabilities of the breakthrough drug [...]

In the wake of the December 2017 approval by the U.S. Food and Drug Administration of voretigene neparvovec (LUXTURNA™) to treat vision loss in patients with biallelic RPE65 mutation associated [...]

This is the fourth in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who completed treatment in March with the breakthrough gene-therapy drug called [...]

Told at age 12 she would be blind by 18 because of her Leber congenital amaurosis, Misty Lovelace of Kentucky participated in the gene therapy trials for LUXTURNA, to treat […]

This is the second in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who completed treatment in March with the breakthrough gene-therapy drug called [...]

It took more than seven years to get a genetic diagnosis for our daughter. During that time, doctors were pretty sure she had LCA, although we also heard that maybe […]