1 in 50 Ashenazi Jews carries the Usher Syndrome Type 1F genetic mutation according to Usher 1F Collaborative, “When both parents carry the gene, there is a 25% chance of the child being affected.
“Usher Syndrome Type 1F is the leading cause of deaf-blindness among Jews.”
In a letter from Melissa K. Chaikof, president of Usher 1F Collaborative, “Usher Syndrome is leading cause of deaf-blindness, and type 1 is the most severe.
“Those affected are born profoundly deaf with impaired balance, then retinitis pigmentosa causes them to gradually lose their vision, first with night bliindness in early childhood, followed by increasingly narrowing tunnel vision, progressing eventually to total blindness. Type 1F is most prevalent in those of Jewish descent.”
Melissa and her husband Elliot Chaikof, who has two daughters with Usher 1F, founded Usher 1F Collaborative in December 2013 to raise funds for medical research for a cure.
Usher IF has, to date, funded an animal model at the University of Oregon to develop gene therapy and they also plan to make a grant to fund gene therapy at University of Iowa.
They are looking for as many children with Usher 1F who could participate in future clinical trials.
Like the saying “It takes a village”, it is very ture in this case. “We need as many as we can to help us raise awareness of this devastating disease,” Melissa Chaikof, president explains.
Usher 1F Collaborative
#228, 321 Walnut Street
Newtonville, MA 02460-1927
www.usher1f.org
V: 617.694.2096
Email: [email protected]
Source: Letter from Usher 1F Collaborative
