Melissa and Rachel Chaikof are in @cttnpodcast 's podcast! From the discovery of Rachel's diagnosis of deafness at a young age to Usher's Type 1 later on, and her fight against it all these years to Melissa and her husband starting the Usher 1F Collaborative and the commitment to research for a cure. Check out the new episode today!
It's on Youtube too: https://www.youtube.com/watch?v=_In3Snj9K1U
A summary of Usher 1F researcher David Corey's presentation to the World Medical Innovation Forum, Gene and Cell Therapy, on his work for a cure for Usher 1F and the success he has realized thus far.
Jaime Recht, who has Usher 1F, is running the Boston Marathon to raise funds for research for a cure. Despite declining vision, nothing stops her!
Global Genes interview with Usher 1F Board Chair Melissa Chaikof
“Aside from retinoid replacement, we can also think about developing more permanent therapies to treat or prevent blindness in people with Usher syndrome type 1F that may correct or replace the other functions of protocadherin-15, as well.” – Zubair M. Ahmed, Professor of Otorhinolaryngology—Head & Neck surgery and Ophthalmology, University of Maryland
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.