Meet Our Team
Our team is made up of dedicated volunteers and a committed Board of Trustees (also known as Directors), all of whom contribute their time and expertise on a voluntary basis. As no one receives payment for their work, we deeply appreciate the dedication, time, and energy each member invests in Usher Syndrome Ireland. Their efforts are vital to the organisation’s success and its mission to support everyone living with Usher syndrome.
Carol Brill
Deborah Heffernan
Deborah Heffernan
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
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.
Deborah Heffernan
Deborah Heffernan
Deborah Heffernan
Founder, Interim Treasurer, & Comms Lead
County Cork
Motivated by my personal experience, I wanted to ensure that no one else would feel alone after receiving a diagnosis of Usher syndrome, or during their journey living with it. This led me, together with Carol Brill and the support of an incredible group of women and co-founders, to estab
Founder, Interim Treasurer, & Comms Lead
County Cork
Motivated by my personal experience, I wanted to ensure that no one else would feel alone after receiving a diagnosis of Usher syndrome, or during their journey living with it. This led me, together with Carol Brill and the support of an incredible group of women and co-founders, to establish Usher Syndrome Ireland.
Our mission is to place the Irish Usher community at the heart of everything we do, improving access to support and reliable information, advocating for greater awareness, and helping to drive research and outcomes so that no one has to face this journey alone again, and can look forward to a brighter future.
Anne Shields
Deborah Heffernan
Anne Shields
Co-Founder & Director
County Down
Anne is a patient advocate living with Usher syndrome type 2.
Deirdre Leech
Dr Solomon Kamal-Uddin
Deirdre Leech
Director
County 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 congeni
Director
County 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.
Eugene Lynch
Dr Solomon Kamal-Uddin
Deirdre Leech
Director
County Wicklow
Eugene, a dedicated father of a teenager with Usher syndrome, brings valuable personal experience and insight to our board. His understanding of the challenges and hopes faced by families in the Usher syndrome community informs his advocacy for greater awareness and improved support systems.
Joining our team of direc
Director
County Wicklow
Eugene, a dedicated father of a teenager with Usher syndrome, brings valuable personal experience and insight to our board. His understanding of the challenges and hopes faced by families in the Usher syndrome community informs his advocacy for greater awareness and improved support systems.
Joining our team of directors, Eugene’s passion and commitment will help Usher Syndrome Ireland continue its mission to build a brighter future for everyone affected by Usher syndrome.
Dr Solomon Kamal-Uddin
Dr Solomon Kamal-Uddin
Dr Solomon Kamal-Uddin
Director
UK
Solomon is a Paediatric Emergency Medicine Consultant with experience across healthcare delivery, research, education, the pharmaceutical industry, and patient organisations. He is passionate about developing patient-focused solutions to challenges in healthcare. As a father to a child with a rare disease, and as a supporter of
Director
UK
Solomon is a Paediatric Emergency Medicine Consultant with experience across healthcare delivery, research, education, the pharmaceutical industry, and patient organisations. He is passionate about developing patient-focused solutions to challenges in healthcare. As a father to a child with a rare disease, and as a supporter of his sister who lives with a rare form of acquired blindness, Vogt–Koyanagi–Harada disease, he brings both professional and personal insight to his work. He is grateful for the opportunity to support Usher Syndrome Ireland, aligning with his personal goal of being as useful and impactful as possible.
Carol Murphy
Dr Noor Al-Saffar
Dr Noor Al-Saffar
Company Secretary
I’m delighted to support Usher Syndrome Ireland as Company Secretary, a charity very close to my heart. Living with a disability, I know how important it is to feel seen, supported, and to be part of a community that understands and shares lived experiences. I have a background in assistive technology and a real passio
Company Secretary
I’m delighted to support Usher Syndrome Ireland as Company Secretary, a charity very close to my heart. Living with a disability, I know how important it is to feel seen, supported, and to be part of a community that understands and shares lived experiences. I have a background in assistive technology and a real passion for inclusion and accessibility. I’m always up for a chat about the latest tech, how our dogs run the place, and pottering about in the garden.
Dr Noor Al-Saffar
Dr Noor Al-Saffar
Dr Noor Al-Saffar
Research Officer
I am a resident doctor working in the Northwest of England, having qualified last year. I am looking forward to starting my role as Research Officer for Usher Syndrome Ireland, as well as leading the Steering Group Committee.
I have a keen interest in paediatrics and rare disease. In medical school, we are told all too o
Research Officer
I am a resident doctor working in the Northwest of England, having qualified last year. I am looking forward to starting my role as Research Officer for Usher Syndrome Ireland, as well as leading the Steering Group Committee.
I have a keen interest in paediatrics and rare disease. In medical school, we are told all too often, ‘When you hear hoofbeats, think horses, not zebras’ – a phrase which I feel can take away from the enormity of rare disease diagnoses and the impact they have on patients and their loved ones.
For this reason, I am really looking forward to working with USI and supporting the charity’s already brilliant work with individuals with Usher syndrome, while exploring the role we can play in advancing care, namely through building a patient registry.
I am looking forward to this opportunity and hoping to connect with many of you along the way
Theresa Schutte
Dr Noor Al-Saffar
Theresa Schutte
Safety Officer
Trudy Matthews
Audrey Jessiman
Audrey Jessiman
Audrey Jessiman
Audrey Jessiman
Audrey Jessiman
Karen Robertson
Audrey Jessiman
Karen Robertson