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Who we are

Thumbnail picture of Sorcha  McPhillips

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.

Email: sorcha@hdani.org.uk
Phone: 079 8284 3907
Thumbnail picture of Gerry  McDermott

Gerry McDermott


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.

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Zélie Clark

Senior Family Support Worker

Zélie joined HDANI in February 2018 as a Family Support Worker with over fifteen years of experience working in the community, statutory, training and voluntary settings and a BA (Hons) degree in Community Health and Social Welfare.

Zélie was appointed to the role of Senior Family Support Worker in June 2021 and will be continuing her studies in September to complete a Diploma in Social Work at Queens University Belfast, as well as working part-time with HDANI.

Zélie’s role includes providing information, emotional and practical support to those affected by HD in the Belfast, Northern and South-Eastern areas.

Email: zelie@hdani.org.uk
Phone: 07733935863
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Glenda Burns

Part Time Family Support Worker

Glenda joined HDANI in May 2021, with over fifteen years of experience working in health promotion and education and also five years’ experience working in family support type roles. Glenda has a Postgraduate Diploma in Health Promotion and a wide range of health care and health coaching qualifications and training. 

Glenda's role includes providing information, emotional and practical support to those affected by HD in the Belfast, Northern and South-Eastern areas, as well as managing our funded Therapy and Counselling Programme.

Email: glenda@hdani.org.uk
Mobile phone: 07921513561
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Sophie McCann

Full Time Family Support Worker

Sophie McCann joined HDANI in June 2021 with over seven years with a wide range of people with complex needs and their families including people with physical disabilities, mental health issues and acquired brain injury. She has volunteered throughout her youth with the Order of Malta and various other charities.

Sophie's role includes providing information, emotional and practical support to those affected by HD in the Southern and Western areas. 

Email: sophie@hdani.org.uk
Phone: 077 1761 4387
Thumbnail picture of Claire McCleary

Claire McCleary

Full Time Family Support Worker

Claire joined HDANI in July 2021, with a background in social work, having worked for a number of years supporting children and young people with a disability or life-limiting illness. Prior to this Claire also worked as a hospital Social Worker and with the Alzheimer's Society, as well as various voluntary roles with organisations including MacMillan, Make a Wish and Guide Dogs. Claire holds a Diploma and Masters in Social Work.  

Claire's role includes providing information, emotional and practical support to those affected by HD in the Belfast, Northern and South-Eastern areas.

Email: Claire@hdani.org.uk
Phone: 073 4189 6790
Thumbnail picture of Ashley Clarke

Ashley Clarke

Full Time, Youth, Awareness & Fundraising Officer

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 been an active volunteer with HDANI for over ten years, at youth events, various fundraisers, a trustee, and has a personal connection with HD.

Ashley's role includes organising youth events, fundraising and raising awareness of HD throughout the year across Northern Ireland.

Email: ashley@hdani.org.uk
Mobile phone: 07810330949
Twitter: @AwarenessHdani
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Dr Lauren Byrne


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.

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Raymond Crilly


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.

Thumbnail picture of Dr Seamus  Kearney

Dr Seamus Kearney


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.

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Richard Hamilton


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.

Thumbnail picture of Janice McCartney

Janice McCartney


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.

Thumbnail picture of Amy  Spence

Amy Spence


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!

Thumbnail picture of Laura Kane

Laura Kane


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!"