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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 Angie  Smyth

Angie Smyth

Part Time Support Worker (Southern and Western)

Angie has been working with HDANI since September 2016.  Alongside this she also works as an integrative therapist providing short and long term counselling to individuals.

Angie has previous experience providing support and delivering information to individuals and groups through roles with NSPCC and MACS.

Angie works from home in Lurgan Thursday and Friday 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: angie@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 Brendan Major

Brendan Major

Treasurer

Brendan has no HD connection and instead joined the board of trustees to share some of his extensive experience of working in voluntary organisations including the NSPCC. As Treasurer Brendan is responsible for ensuring the financial security of HDANI and works closely with Sorcha and our accountant on setting and reviewing our budgets. 
Brendan enjoys hiking and took on a 900mile walk to raise funds for HDANI.

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 Paula  McElhinney

Paula McElhinney

Trustee

Paula has been involved in HDANI for a number of years. She has HD which she inherited from her mother who she helped care for until her death. Paula is married with five children and lives in Co Londonderry. She is an active member in the Limavady Support Group and a volunteer with our youth and befriending services.

Thumbnail picture of Martina Stephens

Martina Stephens

Trustee

Martina joined the board of HDANI in 2015 though she had been a member of the Limavady Support Group and a volunteer for a number of years assisting with youth and befriending and helping to raise funds. Martina is at risk of HD through her mum who has passed away and she has other siblings affected. Martina lives in Swatragh and is married with three children including a little boy who was born through PGD to ensure that even if she develops HD he will never inherit it.