Meet Our Team

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Founder & Chair
Dublin

Since the age of 4, I have lived with a hearing loss, and at the age of 11, I was diagnosed with RP.  When I was 21, my hearing loss and sight loss were clinically diagnosed as Usher 2.  Twenty five years later, a genetic diagnosis confirmed I was Usher 2a.  For many years, I have yearned for a a centralised point of information, advocacy and support for their needs holistically. It's not simply a case of adding hearing loss and sight loss together to give a complete picture of what it is like to live with Usher syndrome. All through the years, I have managed my own needs independently and longed for an organisation that fully understood and supported my needs. I have to live with the disease, whilst still hoping and waiting for a cure.

After 30 years of working with other voluntary patient organisations, I am glad and proud to be a founder of Usher Syndrome Ireland, along with my great friends, Debs, and co-founders, Anne, Karen, Audrey and Trudy. We want to change and enhance the current landscape that exists for people living with this devastating disease. We want newly diagnosed families to feel they are not alone, to feel hopeful and positive, to share our determination that we can and we will make Usher syndrome a disease of the past.  

Together we can. 

Founder & Secretary
Cork

It was very much a lonely time when I was diagnosed with Usher syndrome (USH2A) in 2013 at the age of 34. I had nowhere to turn to in Ireland that could understand exactly what this diagnosis meant for me, provide clear information or resources, along with the emotional impact it had as it changed my life overnight. And the issues didn't just stop there, but continued over the years as both my hearing and sight deteriorated quite significantly. I ended up receiving two cochlear implants at the end of 2018, which much to my relief, were a success. Since the start of my journey, it has always been a personal dream to bring about a change in Ireland so that no one else ever has to feel alone again when they, or a parent(s) of a child, receive the same diagnosis, and throughout their journey with Usher syndrome.  

With previous involvements in the charitable and in the Usher syndrome research sector, these experiences and knowledge has enabled me, alongside remarkable women, to proudly bring to life an organisation that will bring about this much needed change. Usher Syndrome Ireland was born, and we are committed to ensuring that it is the Irish Usher community that is at the heart of Usher Syndrome Ireland’s mission.