Who we are

Sorcha McPhillips

Chief Executive

Sorcha joined HDANI in September 2014 having come from a background in human rights law and charity work. Since joining she has worked on ensuring that HDANI has all of the policies and procedures needed to operate professionally. Sorcha is responsible for managing staff and volunteers,  raising funds, designing and running programmes of work, developing strategies, engaging with media, politicians and policymakers and generally looking after the day to day running of the Association.

Gerry McDermott

Chair

Gerry joined the board of HDANI as Chair in 2018.

Gerry has over 39 years of experience in Human Resources with the Health Service in Belfast and private sector. He is currently the Divisional HR Director with Kingspan Water and Energy.

Gerry has been involved in the voluntary sector for many years - St Vincent de Paul, Samaritans and the Share Centre in Lisnaskea where he chaired the Board of Directors. He was a member of the Board of Governors of South West College of Further and Higher Education and chaired their Staffing Committee for several years.

Gerry enjoys running and became involved with HDANI when he learned that a member of his running group is living with Huntington's Disease. He also enjoys amateur dramatics.

Ashley Clarke

Sessional, Youth, Awareness & Fundraising Officer

Ashley has been an active volunteer with HDANI for over ten years, at youth events, various fundraisers, and a trustee. She has a personal connection with the disease and lives with the risk of inheriting HD through her dad who has sadly since passed away. She is a tireless advocate for young carers in particular and raises awareness of HD at every opportunity.

Ashley joined HDANI as Events and Fundraising Officer in January 2019 through a sponsored internship funded by the Rank Foundation and was appointed as a permanent member of staff in 2021 as our Youth, Awareness & Fundraising Officer. Ashley has since moved on to pursue other work related to her degree but continues to help out on a sessional basis alongside her role as a HDYO global ambassador.

Henna Cooke

Full Time Family Support Worker

Henna Cooke joined us in July 2022. She has a strong background with over 8 years experience of working with a variety of people with complex needs and their families, mental health and physical disabilities, acquired brain injury, and autism. She has worked with families in challenging situations and made a positive difference through supporting them. Prior to moving to HDANI, Henna has worked as a Lead Practitioner managing mental health and delivering behavior interventions. She also have a Master's in Forensic Psychology. In her spare time Henna enjoys volunteering with the Dogs Trust and tutoring horse riding lessons. She is currently on maternity leave enjoying time with her son William.

Rita Heaney

Full-Time Family Support Worker

Rita started working with Huntington’s Disease in October 23. She has a strong background in the community and voluntary sector having worked in various roles since she was a teenager, including as a Youth Leader, Carer, Child Development, Stroke Co-ordinator and in Social Housing. We asked Rita to tell us a bit about herself. "I love to spend time with my family, and friends and all the many pets (mainly dogs), that goes with it and get great pleasure from this. About 2 years ago I began sailing it’s something I always wanted to do but didn’t think I’d ever get the chance. I’m still learning and proof that it’s never to late to learn. Love listening to music, walking and swimming when I get a wee bit of time. I enjoy meeting people and learning new things and new ways to deal with different and sometimes difficult situations. I’m a great believer in everyone you meet either teaches you something or learns something from you. So I’m delighted to have the honour of meeting you all. 

As a wise man once told me, "We are only passing through Do it one step at a time and enjoy the journey".

Mairead McCann

Family support Worker

Hey, I am from Dromore, County Tyrone. At University, I graduated with a BSc in Criminology and Criminal Justice and also a Post grad Diploma in Counselling and Therapeutic Communication. 

I have over ten years of experience in the voluntary and community sector. Since September 2022, I have been working as a Family support Worker with HDANI. My role includes providing information, emotional and practical support to those affected by HD in the Western and Southern areas.

In my spare time, I love to relax with my family, walk our dog, go to the beach and the gym.

Katie McClean

Full-time Family Support Worker

Katie joined HDANI in June 2022. She has a range of health and social care qualifications and over five years experience working closely with people with complex needs, physical disabilities, mental health issues and brain injury. She loves to meet new people and is always up for having some fun. She is really looking forward to getting to know everyone and learning from the organisation.

"Hi everyone, I joined HDANI in June 2022 and by now, have met quite a few people involved with the charity through support groups, events and youth days. I am originally from Carrickfergus but recently moved to Belfast. I attended the Northern Regional College and qualified in level 3 extended diploma Health and Social Care, Level 4 Diploma in Adult Care and Level 5 Diploma in Leadership for Health and Social Care. As a teenager, I volunteered with Mencap and in a local youth club before beginning my first role as a support worker with Sense NI. I have greatly enjoyed my time so far with HDANI and have had the pleasure of meeting so many amazing people across NI who are touched by Huntington’s Disease. I had the amazing opportunity to attend the Huntington’s Disease Youth Organisation Youth Congress in March where I met people from all over the world who are affected by HD and professionals in the HD community. My favourite part of my role is being able to help people in any way I can, even if that may be through just offering a listening ear. In my free time, I enjoy spending time with family and friends and being outdoors.

Dr Lauren Byrne

Trustee

Lauren works in the Huntington's Disease Research Group, UCL Institute of Neurology, London and joined the HDANI board as a trustee in 2018.

Lauren is a Research Associate working with Dr Ed Wild and manages the HD-CSF study. She studied Biology at Imperial College London, graduating in 2014 and completed an MRes in Translational Neurology at UCL Institute of Neurology in 2015. She is currently completing a part-time PhD on developing biofluid biomarkers for HD. Her work on neurofilament light protein in blood was published in 2017 in the Lancet Neurology and received a ‘HD Insight of the year’ award from the Huntington Study group.

Raymond Crilly

Trustee

Raymond joined the board of HDANI as secretary in 2018. He has been the Financial Director of TBF Thompson (Garvagh) Ltd. since joining in 1999, he held senior financial positions in FA Wellworth supermarket group. Raymond serves as a Director of TBF Thompson (Garvagh) Ltd and has recently joined the HDANI board.

Raymond and TBF Thompson have been a longstanding supporters of HDANI through fundraising and awareness for a number of years.

Molly Gracey

Trustee

Molly joined the HDANI board as a trustee in May 2024. Molly is a PhD researcher at the University of Birmingham researching Parkinson's disease, a closely related neurodegenerative condition to Huntington's. She has a Master's degree in pharmacology from the University of Manchester. She is also an ambassador for the Huntington's Disease Youth Organisation (HDYO).

We asked Molly to tell a bit about herself. "I am passionate about research into neurodegenerative diseases, particularly Huntington's because my mum and lots of my extended family suffer from this condition. I am currently untested and happy with this decision. I am an HDYO ambassador and was lucky to have received a scholarship to attend the HDYO congress in Glasgow in 2023. Additionally, I have done a number of interviews (both written and videos) on my personal and scientific experiences with Huntington's. I also ran an event to spread awareness of Huntington's during Huntington's awareness month in May 2023 at Birmingham's ThinkTank Children's Museum, in their 'Meet an Expert' event. I would like to help the board with making research opportunities more readily available in Northern Ireland, such as Enroll-HD, the world's largest observational study for Huntington's.

Richard Hamilton

Trustee

I am a retired Chartered Civil Engineer. I was married to Carol for 37 years before losing her to HD in 2007. We have two Children, Michael and Heather, I currently live in Hillsborough, County Down and am engaged to my partner Christina. My daughter Heather is an active member of the Belfast Support Group.

As a Board member, I would like to enhance the links between the Board and group members, highlighting awareness of the needs and aspirations of group members to the Board so that they can be actively supported. I would also like to promote members attendance at the European HD conferences and if possible make finance available to support attendees. Research is always close to what we all want to achieve and to this end I would support members wishing to enrol with the wider European network as members of the all Ireland group if possible. We are all in this together.

Dr Seamus Kearney

Trustee

Seamus joined the board of HDANI as a trustee in 2018.  He is a consultant neurologist with the Belfast Health and Social Care Trust with extensive experience working with patients with Huntington's Disease.

Janice McCartney

Trustee

I am married to Colin and have two boys Josh and Jake. I live outside Armagh and have been a hairdresser for over 28 years. HD is in my family, my granny passed away with it, I have lived through it with my dad also being diagnosed with HD—he passed away eight years ago.

We, as a family, were his carers, my mum was his full time carer. We saw at first hand how this cruel disease takes a loved one. We have done a lot of fundraising as a family for HD. I would like to be able to reach out to all the families who are affected with HD especially up round Armagh and raise awareness about Huntington’s and the charity which does so much for the families.