HPTH UK is a national patient organisation which aims to:

• support patients of all ages and their families
  
• provide information about HPTH and relevant issues for both patients and professionals
• raise awareness and promote knowledge about HPTH in the medical profession
• campaign for better treatment and assist in research
  
• fund-raise to help us achieve these aims
  

HPTH UK was set up in July 2005 by Liz Glenister to provide information and support for patients and to raise awareness about Hypoparathyroidism in the medical world. This arose in response to her own experience of living with an undiagnosed rare condition following a thyroidectomy in 1992.

HPTH UK grew rapidly from the outset and is now a national organisation run by volunteers who work with their team of medical advisors and other interested professionals to address the needs of HPTH patients throughout the UK and Ireland. At the launch of this new website in January 2010 HPTH UK is about to become a recognised charity. It represents over 500 members, and works with other HPTH organisations around the world.  

The original UK website and online forum was set up thanks to a small donation from the Hypoparathyroidsm Association in America. HPTH UK is now working with and supported by the Society for Endocrinology and is recognized by the British Thyroid Association.

Who's Who at HPTH UK

Liz Glenister, Director
A London teacher since 1976, I had 3 young children when I was diagnosed with thyroid cancer. Post surgical brittle hypoparathyroidism was not diagnosed until many years later by which time I had had to give up teaching, my Governor's role as Chair of Personnel and my MA research due to ill health. I was left to manage my unstable calcium levels and frequent siezures myself and this experience, along with my earlier discovery that no information existed about HPTH treatment either for patients or the medical profession, led me to set up HPTH UK from home in 2005. Later joined by the lovely people you see here, I am proud to be part of this growing organisation and I never fail to be moved by the stories of the patients who contact us and by the efforts of those who work so hard on our behalf.

 Ray Finlay, Science Advisor
Ray Finlay was born in, and grew up near Belfast, Northern Ireland. Moving to England in 1989, he completed a BSc in chemistry at Manchester. Following completion of his PhD studies at the University of Cambridge he moved to the Scripps Research Institute in La Jolla, California as a postdoctoral research fellow. Since 1999 he has worked as a medicinal chemist in both inflammation and oncology drug discovery. When not at work he can usually be found scuba diving around the coast of the UK or trying to guess what his calcium is doing.

Judith Taylor, Public affairs Officer
Judith recently retired after more than 35 years in scientific, technical and medical (STM) publishing where she acquired and managed a host of academic books and journals in many fields including endocrinology, health policy and patient education. Her last position was as Senior Publisher and Director responsible for the physical sciences in the book publishing division of Elsevier. As a 2x thyroid cancer survivor who has also had surgery for primary hyperparathyroidism she has learned from first-hand experience how important it is as a patient to be well-informed and supported. Besides her activities for HPTH UK she is currently a trustee of the British Thyroid Foundation and edits their newsletter & patient education materials.

Mandy Mainland, Newsletter Editor, Forum Administrator  and Project Officer
I'm 31, and live near Perth, Scotland. I had a total thyroidectomy in 2003 due to Graves' Disease, which resulted in Hypoparathyroidism. Since having to give up my job and my flat, due to ill health, I'm now living quietly in the country with the love of my life - my five year old Springer Spaniel, Prince. I assist the Director, work on projects as they arise, run the Scottish Regional group and administer the forum. I took over as newsletter editor last year.

Bridget O'Connor, Telephone Helpline & Fundraiser
I am married with two grown up sons, I am employed by the N.H.S Sure Start, working with families and children 0-5yrs. I was diagnosed hyperthyroid with cold nodule in January 07 and had a total thyroidectomy in November 07. I developed hypoparathyroidism as a consequence. I am still symptomatic with tetany today. I joined the committee because I want to support others who suffer from HPTH and to raise awareness about HPTH UK. I am a trained telephone helpline volunteer and run the HPTH UK helpline ( evenings and weekends). I am also the main fundraiser for HPTH UK and have helped to set up HPTH Awareness Meetings.

Claire Sales, Admin Officer
I’m 29 and recently married but still coming to terms with on-going symptoms from 2 operations for thyroid cancer and a very bad experience with severe tetany. I was searching the internet for as much information as I could when I came across HPTH website. Suddenly there were people who knew and understood what was happening to me – it had happened to them.  I  joined as a member and started reading the Forum which is full of valuable information from real life experiences. It’s invaluable to me that I know I have somewhere to go and talk to people who understand. It soon became apparent to me that I wanted to give something back to the people whose experience and knowledge was indispensable to me, so when Liz put out a request for Volunteers, I responded with a YES!

Bill Glenister, Finance Officer
I live in Sussex with my wife, Liz, and we have 4 daughters & 4 grandchildren. Following family tradition, I trained to be a surgeon but finding I couldn't stand so much blood, gave it all up for art. In a strange turn of fate, I now draw Liz's blood  and deliver it to the surgery for testing. I taught for 20 years before retiring due to M.E. I occasionally advise HPTH UK on medical matters and as Finance Officer, I keep the accounts in order.

Ivor Humphreys, Webmaster
After 22 years in music/audio magazine journalism as an editor, writer and in IT, I went freelance in 2000 doing much the same thing. Nowadays my work centres around CD mastering and web design. I met Liz and Bill when they invited me to construct a portfolio website for Bill's art and soon after that put together the first HPTH UK site for Liz. It's lovely to work with friends.