About Us

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Usher Syndrome Ireland came into existence in 2021, established by Carol Brill and Deborah Heffernan, both of whom personally navigate life with Usher syndrome. Their personal experiences highlighted the pressing necessity for an organisation capable of understanding the unique needs of individuals, children, and families affected by this life-altering condition. From the moment of diagnosis onward, their aim was to offer unwavering support and information throughout the entirety of their journeys.

Additionally, Carol and Deborah undertook the ambitious task of instilling hope within the Usher syndrome community. Their commitment extended to fundraising for scientific research, with the goal of discovering a treatment or cure that would make this devastating condition a disease of the past. 

Anne Shields and Karen Robertson, both individuals who share the experience of Usher syndrome, were enlisted by Carol and Deborah to join the founding Board of Directors, and together with Audrey Jessiman and Trudy Matthews, they united to establish Usher Syndrome Ireland. The organisation officially attained its charitable status on November 30th, 2021.  

In the following year, 2022, a new director, Deirdre Leech, joined the board. As the year progressed, we bid a heartfelt and appreciative farewell to Audrey. In January 2023, the Board welcomed a new addition, Dr David Ashley. 

Functioning as an entirely voluntary entity, Usher Syndrome Ireland holds profound gratitude for the dedication and commitment exhibited by every individual involved in furthering the organisation's mission.