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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 policy makers and generally looking after the day to day running of the Association.


Sorcha works from home fulltime.

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

Chair

Gerry joined the board of HDANI as Chair in 2018.

Gerry has over 39 years 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 Feb 2018 with over 10 years’ experience in social care and support work most recently with the Alzheimer’s Society, Zélie has as a BA (Hons) degree in Community Health and Social Welfare.

Zélie’s role includes providing information, emotional and practical support to those affected by HD as well as training to health and social care professionals.

Zélie works Monday - Friday in addition to facilitating the Belfast and Maghera Support Groups.

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

Part Time Family Support Worker

Glenda joined us on 10th May 2021.  She has 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. She will be working from home from Monday to Wednesday. 

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

Full Time Family Support Worker

Sophie McCann says she is delighted to be joining the HDANI as a full-time family support worker covering the WHSCT. She has worked for over 7 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. In her personal time, she loves to use the gym and has trained for 3 years in kickboxing. She describes herself as a bubbly person with loads of energy and says that she can’t wait to learn from the organisation, also learn the most from the amazing clients and family at HDANI. She is keen to spread the word and educate as many people as possible about HD and the services and support that HDANI provides for families. I’m delighted to be part of the team and can’t wait to meet you all!

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

Claire McCleary

Full Time Family Support Worker

Claire will be joining the HDANI team in July 2021 as a Full-Time Family Support Worker. Her background is 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 she also worked in hospital social work and with the Alzheimer’s Society. Most recently work has focused on providing one to one support for children with special educational needs in a secondary school. Claire has also been involved in various voluntary roles with organisations including Macmillan, Make a Wish and  Guide Dogs. She holds a Diploma and a Masters of Social Work. Claire’s role as Family Support Worker will include providing information, advice, practical and emotional support and she is looking forward to her new post working alongside people with Huntington’s, their families and carers.

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

Fundraising, Youth and Events Officer

Ashley has been involved with HDANI for over ten years, having been a volunteer, trustee, committed fundraiser and has been the Events and Fundraising Officer since January 2019. This was a 12 month internship funded through the Rank Foundation. Ashley has a personal connection with HD as her father Dessie has HD and Ashley has been his carer from the age of 15.

Ashley is now a permanent member of the team in the role of Youth, Awareness & Fundraising Officer works Monday – Friday, available to help with any fundraising enquiries and cheque presentations, she is also responsible for organising the youth events throughout the year.

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

Trustee

Lauren works in the Huntington's Disease Research Group, UCL Institute of Neurology, London nnd 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

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.

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Dr Seamus Kearney

Trustee

Seamus joined the board of HDANI as trustee on 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

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.

Thumbnail picture of Janice McCartney

Janice McCartney

Trustee

I am married to Colin and have two boys Josh and Jake. I live outside Armagh and have 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

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!

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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!"