Introducing our Scientific Advisory Panel

CUREUsher is a charity dedicated to raising funds for Usher syndrome research, and we want to ensure that all money raised by YOU goes to the most promising research of the highest quality in order to find a cure or treatment for Usher syndrome. In order to help us with the difficult task of deciding… Read more »

A group of people standing together posing for the camera.


As we look back on USHDAY 2019, Usher Syndrome Awareness Day, we reflect on how much was gained in such little time. First started in the US five years ago by the Usher Syndrome Coalition, this day is now celebrated globally on the third last Saturday of September. Why was this day chosen by the… Read more »

Daniel de Boer

Patients First

By: Daniel de Boer First and foremost, CUREUsher has created a welcoming community for everyone affected by Usher syndrome ? patients, loved ones, caregivers, and the medical community. It means a lot to me that I am able to share my story here. As the father of a son with a cystic fibrosis, I am… Read more »

A group photo, from left to right, Merrill Osmond, Deborah Heffernan, Carol Brill, Joanne White, Ian Rankin and Justin Osmond.. Gala rasing funds for Usher syndrome research

The Hearing Fund UK 8th Gala benefitting CUREUsher

The recent Hearing Fund UK annual gala, held in Leeds at the Royal Armouries, featured a wonderful evening of entertainment with Merrill and Justin Osmond, and friends. CUREUsher was selected to benefit from the proceeds of this year?s event to support our work to fund research into Usher syndrome, the leading genetic cause of deafblindness.… Read more »

[Image description: Image contains the text as in post describing tips on how to make your content more accessible. CUREUsher?s logo is on the bottom left.]


Making your images, videos, website and social media content accessible to all can create a more inclusive world online, and one that everyone can be a part of. The following are some tips that may help to make your content more accessible for those that have visual impairment and hearing loss. Always include alt text… Read more »

[Image description: Image contains three images of Helen Keller at different stages in her life. One is a graduation photo of her. Another is of her as a young woman. And the last image is of an old woman. All images are in black and white. The text in the image lists interesting facts about Helen Keller as in the post. CUREUsher?s logo is on the bottom left.]


It?s day four of ?Deafblind Awareness Week?, and today we are also celebrating ?Helen Keller Day?. This day, June 27th, is dedicated to Helen Keller every year, as this was her birthday. We mark Helen Keller day to celebrate her life and of all her accomplishments despite the challenges she faced during a time of… Read more »

[Image description: Image contains the text as in post describing tips on hot to help/guide a person who is deafblind. CUREUsher?s logo is on the bottom left.]


It?s day 3 of ?Deafblind Awareness Week?, and today it?s all about tips! Sometimes a person who is visually impaired or deafblind may require assistance when out and about. If you think someone requires assistance but you are a little unsure how to offer your help, then keep the following tips in mind. Remember, a… Read more »

[Image description: Image contains all the wording in the post busting the Myths and misconceptions of deafblindness. CUREUsher?s logo is on the bottom left.]


It?s day two of Deafblind Awareness Week, and today we?re tackling the myths and misconceptions of deafblindness. There are so many myths and misconceptions surrounding deafblindness, so we?ve put together a few of those, and BUSTED them! Deafblindness varies widely from person to person that is affected by it. For some, the dual-sensory loss can… Read more »

[Image description: A symbol cane stands next to a mobility cane up against a wall. Both canes have red and white stripes. To the right of the image are wordings with the caption ?Deafblind Awareness Week?, and a brief explanation what the red and white symbol on a cane represents.]


DEAFBLIND AWARENESS WEEK Deafblind Awareness Week (DBAW) is running from today, 24th June, to 30th June 2019. The purpose of this week-long awareness campaign is to create more understanding and enlightenment of deafblindness. During DBAW we are hoping to dispel some of the myths and misconception surrounding deafblindness as well as creating a more positive… Read more »

Joanne White in front of her PC with CUREUsher website displayed on screen.

Founder of CUREUsher interview with BBC Look North

Joanne White, founder of CUREUsher, talks with BBC Look North about family life and her motivations behind setting up CUREUsher, a charity raising funds for Usher syndrome research. Subtitles/Closed captions are available by clicking the CC button.