Amanda is a PhD student in the lab of Usher 1F researcher Vincent Tropepe at the University of Toronto, Toronto, Canada, investigating disease modelling for retinal development and disease mechanisms. She is first author on ‘ Usher syndrome type 1-associated gene, pcdh15b, is required for photoreceptor structural integrity in zebrafish’, published in DMM. (PCDH15 is the gene on which mutations cause Usher 1F.)

Usher 1F patient Jessica Chaikof talks about the difficulties navigating secondary education and challenges with disability services at her graduate school, with other students with disabilities also describing their struggles.

"Arts & Science researchers at the University of Toronto trying to solve a rare disorder — which leaves newborns with profound hearing loss and gradually robs them of their vision — are celebrating a recent funding boost.

"Just ahead of Usher Syndrome Awareness Day on September 18, researchers led by Vincent Tropepe, a professor of cell & systems biology, have received a $50,000 donation from the Usher 1F Collaborative, a U.S.-based non-profit."

Here is Recht’s advice to other mothers this Mother’s Day:

“Your attitude should be positive, no matter who you are or what challenges you may have. Perhaps you use a wheelchair, you’re blind, or have any other issues. Don’t let it affect you or limit you. Be positive. Have a positive attitude. That’s going to be effective.”

More great coverage of the #Usher1FCerealChallenge? Go Zachary! We will do this for you and for everyone with #usher1f! Thank you WJLP for covering this story.

More great media coverage for Usher 1F Collaborative and our Cereal Challenge!

Dorie Shapiro won't let Usher Syndrome Type 1F keep her down.

"Atlantan Karen Garber Shulman and her husband Matt understand what it means to be a friend where distance is not a barrier. They are supporting their University of Arizona college friend Jared Root and his wife Rachel who have a personal family mission that spans the miles.

"The Roots are parents of a 9-year-old son Zachary, who was born deaf and has a genetic disease that affects Jewish children. This New Jersey Jewish family brainstormed the idea with their friends to raise awareness and funds for research into Zachary’s condition. They created the Cereal Challenge, which offers a small taste of what life might soon be like for Zachary. The challenge, sweeping social media, asks people to blindfold themselves and make a bowl of cereal."

More coverage of Zachary and the #usher1fcerealchallenge!

Zachary Root and his family talk about the #usher1fcerealchallenge and Usher 1F on TV in New York.