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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
Thumbnail picture of Gerry  McDermott

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.

Thumbnail picture of Kathryn McCready

Kathryn McCready

Part Time Support Worker (Southern and Western)

Kathryn has been working with HDANI since March 2020.  She has a background in nursing, specialising in adult palliative care before retraining as a lay minister providing emotional and practical support for over five years to families attending the Southern Area Hospice.

Kathryn works from home in Armagh, Monday to Thursday, and also facilitates the monthly Omagh and Newry Support Groups.

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

Email: kathryn@hdani.org.uk
Mobile phone: 07921 513561
Thumbnail picture of Zélie Leech

Zélie Leech

Support Worker (Belfast, Northern &South Eastern)

Zélie joined HDANI in Feb 2018 with over 10 years’ experience in social care and support work most recently with the Alzheimer’s Society, as well 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 - Thursday in addition to facilitating the Belfast and Limavady Support Groups.

Email: zelie@hdani.org.uk
Phone: 07733935863
Thumbnail picture of Ashley Clarke

Ashley Clarke

Fundraising 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 is 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 works Monday – Friday, available to help with any fundraising enquires and cheque presentations, she is also responsible for organising the youth events throughout the year.

Email: ashley@hdani.org.uk
Mobile phone: 07810330949
Thumbnail picture of Lauren Byrne

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.   

Thumbnail picture of Raymond Crilly

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.

Thumbnail picture of Dr Seamus  Kearney

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.

Thumbnail picture of Richard  Hamilton

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 am a hairdresser for over 28years . I live outside Armagh . HD is in my family my granny passed away with it , I have lived through it with my dad diagnosed with HD he passed away eight years ago. We as a family were his careers 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 family’s

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!