Usher Syndrome Ireland is borne out of an online support group, called Usher Ireland, on Facebook since 2014. This online group was created at a time when there was little to no way for people living with Usher syndrome in Ireland to find others living with the condition. Usher Ireland was moderated by a team of four women who have Usher syndrome - Anne, Carol, Deborah, and Karen, with the purposes of connecting people in Ireland and globally, as well as sharing information about the disease and research updates too.
It was never imagined this team would found and establish Usher Syndrome Ireland along with two other women, Audrey and Trudy. We are extremely proud that our all-woman and patient-led founding Board of Directors, with a vast array of expertise and knowledge, share the same passion to found a charity that will focus exclusively on the Irish Usher syndrome community continuing to grow the goals of the original online support group, along with the objectives of stimulating a much needed drive for scientific research for a cure or treatment for Usher syndrome.
Usher Syndrome Ireland is a voluntary, non-profit charity meaning that no-one is paid for their time and work. Therefore we greatly appreciate for the dedication, time and energy that each member give to Usher Syndrome Ireland in order to make the organisation a success and enable it to continue in its mission.
Read more about our team here.
Usher Syndrome Ireland's mission, as per its governing constitution, is to promote and protect the health of those suffering from genetically inherited Usher Syndrome, through the provision of information for people affected by this condition, and by funding scientific research into the causes, treatment and cure of all types of the condition and publishing the useful results.