Published: 19 June 2020
Last updated: 4 March 2024
HARRY FELLER SEES the world through blue-framed glasses, ignoring his ever-worsening eyesight as he runs, sings and plays. But now there’s new hope for the eight-year-old and others who suffer from Usher 1F Syndrome, a rare genetic disease that causes deafness and blindness.
A United States-based non-profit foundation, the Usher 1F Collaborative received a US$450,000 grant from the “Rare as One” project launched by the Chan Zuckerberg Initiative (CZI).
The CZI was established in 2015 by Facebook CEO Mark Zuckerberg and his wife, Dr Priscilla Chan.
The grant, announced late last winter, is part of a total $13.5 million in funding CZI is awarding to 30 patient-led organizations.
The cash infusion also represents a rare glimmer of positivity as the world continues to struggle with the COVID-19 epidemic.
Predominantly affecting Ashkenazi Jews, the gene mutation affects about 4,000 people worldwide, while other forms of the disease affect up to 400,000 people. According to a 2003 US National Institute of Health study, the mutation originated about 350 years — or 14 generations — ago.
FULL STORY Facebook founder funds research into genetic disease targeting Ashkenazi Jews (Times of Israel)
Photo: Harry and Daniel Feller (courtesy)
