Fund a Cure for Usher Syndrome 2C

Usher syndrome (USH) is a rare inherited condition and the leading genetic cause of deafblindness, affecting over 400,000 people worldwide. It impacts three major senses - vision, hearing, and balance. There are three clinical types of Usher syndrome. Type 2 presents with moderate to severe sensorineural hearing loss at birth followed by progressive vision loss due to retinitis pigmentosa.

There is currently no cure for Usher syndrome, but there is hope! Dr. Erwin van Wijk at the Radboud University Medical Centre in the Netherlands leads a team of researchers who are are actively working on treatments to slow or stop the progression of vision loss in those affected. You can read more about it here! The grant currently funding the project focused on 2C runs out at the end of March 2025. Without the necessary funds, the work will have to pause, wasting precious time in the race for a cure. To fund another two years of research, 200k euros is required so their team can continue this amazing and life changing work.

Our group is committed to helping raise the funds so this important research can continue and lead to a treatment for our loved ones diagnosed with USH. We are teaming up with the Dutch Usher Syndrome Society to make this possible (hence the donation currency in Euros). We appreciate any support you can provide! 97.1% of your donation goes directly to funding the research (GoFundMe charges a 2.9% transaction fee). For larger transactions, please Venmo so as much as possible can be put towards the research.

See below for a video from the Radboud University Medical Centre where PhD student Merel Stemerdink provides an overview on Usher syndrome, potential therapies, and where raised funds will be allocated.

**Due to the donation currency (Euros), some banks/credit card companies are flagging the transaction as fraudulent. Please be sure to check with your bank to clear the charge if necessary. The donations are in Euros because they are directly funding the research in the Netherlands. Donations can also be made via Venmo, which will then be wired to the Netherlands.**