A Letter from Board Members Josh Cohen and Heather Rosenstein
We write to you today as board members of Usher 1F Collaborative, but our story that brought us here is a bit different than our board peers. Our families are not personally impacted by this genetic disease. However, we have walked side by side with our friends whose lives were turned upside down and we felt compelled to join them in their battle to improve the future for their children.
As dear friends of Jared and Rachel Root, we have delighted in watching their children grow. Their youngest son Zachary, now 11 years old, lives with Usher 1F. Zachary recently found his niche on stage and loves to use his energy and creativity to entertain and perform for others. But it wasn’t an easy road getting there, as he first spent years trying to join his friends on the athletic fields but faced too many challenges with his vision loss and balance problems, caused by Usher 1F.
Since joining the board it’s been a privilege to get to know Melissa and Elliot Chaikof as well. Two of their three children live with Usher 1F. Their youngest daughter, Jessica, is a doctoral candidate at Brandeis University. While she thrives in the world of academia, she has always been limited in experiencing college to the fullest. Due to her disability, she cannot be on campus after dark because she would not be able to safely get home without light. Thus, she finds it hard to socialize with her fellow students, which is an integral piece of the learning experience.
The stories go on – children born with a lifetime of potential surrounded by families who will stop at nothing to make their dreams come true. But there is currently no treatment they can access to combat their loss of vision.
In the absence of research for a treatment, these families came together to form Usher 1F Collaborative. We are proud to be a part of this effort, not only to support our friends, but to be a part of the exciting research that will change the lives of those who live with Usher 1F and potentially other inherited retinal diseases.
The time is now. Our powerful research collaborative is close to turning the corner towards clinical trial. But we are not there yet. An FDA-approved gene therapy already exists for another type of inherited retinal disease, and the groundwork is laid for Usher 1F. We are committed to seeing our research through to the clinic for our own gene therapy, which will be 2-5 years from now.
We hope you will join us in this effort to raise $100,000 for our Ten-Year Anniversary Campaign, of which $30,000 has been raised. We are counting on our community to reach the goal in the next sixty days. We ask today that you please join us by donating to Usher 1F Collaborative to improve the futures of Zachary, Jessica, and others who live with this uncertain future.
Josh Cohen and Heather Rosenstein
Directors, Usher 1F Collaborative