World Sight Day 2019 logo

World Sight Day 2019

Today is World Sight Day (WSD), an annual day of awareness to focus global attention on blindness and visual impairment. According to the World Health Organisation(WHO), there are approximately 2.2 billion people globally that have a visual impairment or blindness, of whom at least 1 billion have a vision impairment that could have been prevented… Read more »

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 woman is standing next to a teenage boy wearing American football gear

Carrie Ann Golden

NAME: Carrie Ann Golden AGE:48 WHERE ARE YOU: Grand Forks, North Dakota COMMUNICATION METHOD: spoken, text/email YEAR OF USHER DIAGNOSIS: 1992 USHER TYPE: 2 FAMILY/CHILDREN: Husband of twenty years and a sixteen-year-old son CAREER: Worked in the Banking industry for nearly 15 years after a short stint in the fitness/sports industry. ?Retired? in 2015 at… 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 »

Surrounded by water, a woman is sitting holding a small child in her arms. A young boy is sitting next to her.

Meagan Moore

NAME: Meagan Moore AGE: 32 years old WHERE ARE YOU: Bend, Oregon COMMUNICATION METHOD: Oral YEAR OF USHER DIAGNOSIS: 2011 USHER TYPE: 2A FAMILY/CHILDREN: I married my high school boyfriend, Joel, and we have three amazing kids. Jedidiah who is 6, Mordecai who is 3 and Myra who is 1. CAREER: I worked as an… 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 is a headshot of Hunter, showing him smiling at the camera with big brown eyes.

Hunter Fox Harlan

Hi! My name is Hunter Fox Harlan and I have Usher Syndrome 2A. I know you?re thinking, what is that? The definition of ushers is: Usher Syndrome type 2A is a genetic condition characterized by hearing loss from birth and progressive vision loss that begins in adolescence or adulthood. The vision loss is due to… Read more »

Anne Shields

NAME: Anne Shields AGE:56 WHERE ARE YOU: Ardglass, County Down, Northern Ireland. COMMUNICATION METHOD: Oral YEAR OF USHER DIAGNOSIS: 1986 USHER TYPE: Usher syndrome type 2 FAMILY/CHILDREN: Husband, and 4 children (3 girls and one boy). Also have 6 grandchildren, (4 boys and two girls). CAREER: Customer Advisor HOBBIES: Linedancing, jiving, and walking. NAME THREE… Read more »

Image shows Audrey wearing a wine-coloured top and jeans, holding a cane and standing on a beach.

Audrey Chard

NAME: Audrey Chard AGE: 33 WHERE ARE YOU: Pacific Northwest of Washington State, USA COMMUNICATION METHOD: Spoken. YEAR OF USHER DIAGNOSIS: 2004 USHER TYPE: Type 2, but I don?t know subcategory. FAMILY/CHILDREN: Single CAREER: Clinical Receptionist Representative. HOBBIES: Scrapbooking and wood burning art, audio books, writing. NAME THREE WORDS TO DESCRIBE YOU: Kind, shy and… Read more »