Tag Archives: hope

Developments in Gene Therapy

Today we learned about the first person in the US treated for a degenerative retinal disease using an FDA approved gene therapy.  Jack, a thirteen year old boy who is in the video below has a retinal disease which is caused by a mutation of the gene RPE65.  Jack’s condition was treated on Tuesday and […]

USH Connections Conference

  This Thursday we head to the 9th Annual USH connections conference in Chicago.  It will be the largest Usher Syndrome related event we have been to.  Along with 200+ other people, both families and individuals affected in some way by Usher Syndrome.   We will be travelling with mixed emotions, on one hand we […]

All Things are Difficult Before They Become Easy

My experience as a parent of a disabled child.

Awareness Will Be the Catalyst for a Cure

Rebecca is doing her part to help find a cure.  The Foundation Fighting Blindness reached out to us to ask if they could use her story and her pictures in their latest campaign to raise funds to help find a cure.  We were of course happy to help and love the way the email campaign […]

A New Perspective

I was driving home from the office the other day thinking of the day we found out that Rebecca would lose her vision and how hopeless we felt during those first few weeks.  We were hoping for a cure but mostly we were preparing for her to lose her vision.  When we started the blog […]

Fundraiser Approaching!

Only a month and a half away and so much to do but we are in really good shape and really excited about a fun night out to help raise awareness about Usher Syndrome, and generate proceeds to help find a cure for blindness.  We have had tons of support from friends, family, and our community […]

The World is Not Ready For Her

This is a TED X talk by the CEO of the Perkins School For The Blind, Dave Power.  We have a teacher who comes out from the Perkins school once a month to work with Rebecca.  For folks who do not know, the Perkins School For The Blind is where one of the most well […]