Meet the Board of Trustees of CUREUsher

A few years ago, Joanne White and Carol Brill had a passionate weekend-long discussion in Carol’s kitchen in Dublin for the need of a charity specifically and exclusively dedicated to Usher syndrome research in the UK and Ireland. In late Summer 2018, Joanne seized the opportunity to set up this much needed charity and called on Carol and Deborah Heffernan to establish CUREUsher, because she knew that these two ladies shared the same passion and goals as she did. Very quickly, with all hands on deck, these ambitious ladies set about bringing the charity to life. CUREUsher was formally founded and registered with the Charity Commission on 20th December 2018 with Joanne, Deborah and Carol as trustees.

In March 2019, a new trustee, Ian Rankin, joined the Board of Trustees, specifically as Treasurer. CUREUsher aims to expand the Board of Trustees over the coming year in order to expedite its efforts to fund scientific research and to make Usher syndrome a disease of the past. To do this, CUREUsher wishes to encourage voices internationally; from patients, friends and families, to healthcare professionals and organisations – calling for more funding into a cure and treatment for those living with Usher syndrome.

As a non-profit charity, the trustees, board of directors and volunteers all dedicate their time, passion, and commitment on a voluntary basis in order to help CUREUsher fulfil its mission. We are grateful to each and every one of them for being a dedicated and committed member of CUREUsher creating a wonderful team spirit. Together we will make Usher syndrome a disease of the past.