SSH Supports RARE Act 2018
Sofia Sees Hope has joined with dozens of other organizations representing the 30 million men, women, and children living in the United States with rare disease, to support the Rare Disease […]
Life After LUXTURNA: ‘Now He Can See’
This is the sixth 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 LUXTURNA™, [...]
New Patient Services Program Helps People Navigate Their Road To A Cure
Now that LUXTURNA™ has come to market as a revolutionary vision-restoring genetic treatment, how does it get to patients? The answer to that question and many others can be found within […]
College Connection: Making A Successful Transition To College
By Jack McCormick Starting high school or going off to college is not easy; new people, classes and sometimes even a new city makes for a stressful transition. Doing it […]
Sofia Sees Hope Receives Grant from Community Foundation for Greater New Haven
Ledyard, CT (April 9, 2018) — The Community Foundation for Greater New Haven recently awarded Sofia Sees Hope a $5,000 grant to help SSH create long-term financial planning and revenue […]
His Future’s So Bright, He’s Gotta Wear Shades
This is the fifth 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 LUXTURNA™, [...]
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 [...]