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.  

Co-Founder & Treasurer
Dublin

A silver lining in my life has been inheriting a very dear friend that loved the same person I loved. My friend has Usher syndrome, and while she amazes me with her zest for life, her energy and her 'get up & go' attitude, I’ve seen the impacts it has on her along with the need for better support and services to be provided to her and all people living with this dual-sensory loss. As too is keeping the hope alive that a treatment will one day become a reality for everyone living with Usher syndrome. It is for this reason I decided to be a part of making this happen by becoming co-founder and director of Usher Syndrome Ireland.

Outside of my work, I love anything mid-century modern, so I like to browse markets/charity shops etc., for any vintage gems and recently have dusted off my camera to discover the west coast of Ireland via the Wild Atlantic way. 

Director

Galway

I have been working in the field of deafbindness for over 25 years, first as a Teacher at the Perkins School for the Blind in Boston and now as an Outreach Consultant for the Anne Sullivan Foundation since 2010.  I have a passion for all of the work I do, but am most interested in working with children who are congenitally deafblind, creating adapted literacy materials, bringing awareness to deafblindness through training. Most recently, through collaborating with Carol Brill on some projects, I have added Usher Syndrome to the list of areas that I want to give more time and energy to. I look forward to working with this very strong team on making the lives of people living with Usher Syndrome better.

Director

Dublin

 David has a PhD in Clinical Metabolism and has over 20 years of experience in healthcare, science, and the biopharmaceutical industry. He has served as Medical Director for several large pharmaceutical companies in both national and international roles, where he has gained substantial experience working with Patient Advocacy Groups, Medical Academia, and Industry Bodies. 

David has significant previous experience as a volunteer in the sport of rowing where he has coached at grass roots, club, and international level. He is very much looking contributing to and learning from the team at Usher Syndrome Ireland