"Learning online is so much more of a challenge for Zachary. He cannot hear as well, see as well, and is struggling to learn to his potential." ~Rachel & Jared

As the world navigates this unprecedented and challenging time, we are hyper aware of the additional burden placed upon those living with Usher 1F. The ways in which the world has adjusted during this global pandemic have been broad and swift. Unfortunately, this means that our community feels an extra impact.

We have heard from members of our community across the globe about their challenges at this time. Social distancing makes everyday interaction that much harder. Tactile communication used by the deaf-blind requires touch, which is now limited. While masks are helpful in reducing the spread of COVID-19, they muffle voices and render lip-reading impossible. Society just feels less accessible to those with Usher 1F in these times.

So many of us love to travel, but our community is hit especially hard by this aspect of shelter-in-place. For those dealing with the loss of vision, they are literally racing time to see all of the destinations they long to visit. While many of us have had to postpone planned trips, few have to worry as those with Usher 1F do if they will be able to see those places when travel resumes.

Most of us are now working from home; no matter what one’s role may be, people are being asked to do more with fewer resources. With every meeting and class moved online, please be mindful of how that affects the Usher 1F community. Individuals’ eyes are even more strained, as they not only have to pay attention, but many must actively read lips as well. Voices are muffled over the best internet connections, and visuals can be pixelated more often than not. Also, some members of our community are unable to use video conferencing software at all! Traditional support mechanisms offered by schools cannot be replicated when students are at home, leaving many without any of the support systems they are accustomed to. This, unfortunately, leaves students with Usher 1F not learning to their full potential!

Lastly, the vital work being done by researchers across the globe has been greatly affected. Many members of our community expressed concerns over delays caused by lab closures. Our researchers are proceeding where able while our labs are only permitted a skeleton crew. They are analyzing data and working on plans for when regular hours resume. Despite the slowdown, we have realized some exciting progress:

  • First testing of gene replacement in our mouse model has begun
  • Two types of gene replacement: split gene and mini gene are advancing at multiple labs
  • Utilizing a bonus end of 2019 grant from the Ganz Family Charitable Foundation of Canada, our Oregon team is working to create an even better zebrafish model using advanced gene-editing techniques
  • Establishment of a natural history study is ongoing 

We are living in unprecedented times in a fragile world. Please be mindful of those around you and the circumstances in which we are all living. Take the time to reach out to fellow members of our community. While we cannot be together physically, let us connect digitally!

 

"Because of the coronavirus, I am losing my race against time to travel and see the world." ~Anna

"The coronavirus has affected me by making me feel more isolated than I already am due to Usher 1F." ~Jessica

"I fear that I won't get to explore and view beautiful sites before I lose my vision. Being unable to plan trips because of the coronavirus makes me angry, as my vision loss is not going to wait until COVID passes." ~Dorie