Tag Archives: awareness

USH Connections 2019

Two years ago, we went to our first Annual Usher Syndrome Coalition Conference in Chicago.  We were in such a different place than where we are today.  While I loved the city of Chicago, I can remember being overwhelmed with worry and fear.  Chicago was great, but the reason for our visit there, absolutely terrified […]

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 […]

These Little Hands

Is ASL a Language? A regular question that comes up when raising a deaf child.  It comes up when talking with friends, with family, with other parents, when talking with doctors and specialists, and it comes up during her developmental assessments.  It’s a question I may have asked prior to having a deaf child, after […]

Usher Syndrome Fundraiser

In honor of our daughter Rebecca and all others fighting this disease, we are holding a fundraiser to raise awareness and funds for Usher Syndrome, the leading cause of congenital Deaf/Blindness.  All money raised will be donated directly to the Foundation Fighting Blindness who are leading the efforts to find a cure for Usher sSyndrome.  There […]

Bittersweet

On Wednesday December 21st our family was invited to an Usher Syndrome awareness event that was being sponsored by Arts for USH.  The significance of the date was that it coincided with the winter solstice and occurred on the darkest day of the year.  Not exactly sure how many people walked but I believe it […]