With one full-time employee and a host of volunteers we have become the heartbeat of the Usher syndrome community. We are the primary source of information for hundreds of families in dozens of countries. We have connected families with families and researchers with funding sources. We have successfully run conferences with hundreds of participants including the largest gathering of the Usher syndrome community in history. We have worked with Congress and the National Institutes of Health (NIH) to make Usher syndrome research a higher priority on the federal level and to ensure that there is more money available for researchers.
There is much more to be done. We have included a list of volunteer opportunities that are typically available. If you would like to join our efforts please fill out the form below and we are certain we will find a way for you to make a difference.
Volunteer Opportunities Available
Volunteer Guest Speakers