Dinner in the Dark: A Culinary Adventure to Raise Funds Retinal Disease
Hope in Focus will host its signature fundraising event of the year – Dinner in the Dark – on Saturday, Nov. 2, 2024, at Foxwoods Resort Casino in Mashantucket, CT. […]
VISION BEYOND SIGHT: The Power of Community
It can be easy to feel alone living with an inherited retinal disease (IRD). As a kid, only one other person in my school had a visual impairment. Recently, I […]
Sofia Sees Hope Gives $100K For Research and Genetic Testing for Inherited Retinal Disease Patients
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 [...]
Living with LCA: ‘It does no good to have pity’
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 [...]
Tell Us Your Story: ‘Do Not Limit Yourself’
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 […]
Parent Support On Line 1
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. [...]
Living With LCA: Maverick Johnston
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 [...]
SSH Opposes States’ Efforts to Limit Access to LUXTURNA™
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 [...]
Post-Surgery: Beginning to See the Light
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 [...]
Misty Lovelace: ‘I Can See Little Things’
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 […]