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.

Mairead McCann

Family support Worker

Hey, I am from Dromore, Co 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.

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.

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.

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.

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.

Amy Spence

Trustee

Hi everyone, I’m Amy Spence, nice to e-meet you all! To give you a little insight into me here’s some key points. I’m a 28-year-old personal assistant living in Larne (no insults please) with my fiancée who I’m marrying next year. Eeep. HD entered my family back In 1994 when my Granda was diagnosed. My family found out about this in 2012/2013 and did all we can to learn more about the disease. As I lived with my grandparents I became a key carer for my Granda who unfortunately lost his life to HD in June 2017. My Granda had two children – my Mum who tested negative and my Uncle who is yet to be tested. By becoming a trustee I hope to achieve three main goals: continue gaining knowledge of the disease; help to improve the charity and its resources by raising awareness and being creative; support the current and future members the best I can. Lastly, I would like to thank the board for welcoming me and giving me the opportunity to be a wonderful trustee, I hope I can serve you all well!

Laura Kane

Trustee

Laura Kane joined us as a trustee on 1st April 2021. She wants you to know; "I am delighted to have the opportunity to become a Trustee at HDANI. I have a close family connection to Huntington’s Disease, with all four on my mother’s side of the family succumbing to this illness. I have also been through the testing process, participated in the HD-YAS medical research study and done fundraising events in my workplaces. My career to date has been based around consumer law and consumer protection and in the last five years has been in policy and strategy. This has given me experience in working with Board members to achieve good policy decisions and outcomes, which has sparked my interest to become a member of a Board myself. Naturally, I have gravitated towards HDANI due to my connection with the illness and the way in which this charity has supported my family/others affected by the illness over the years. I am looking forward to using my professional skills and personal experience to help further the objectives of HDANI. In my spare time, you’ll find me studying for a course in therapy, or at the beach with my dog, sometimes taking a dip in the sea if I’m brave enough!"

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".