From the Director

Welcome to  our website which I hope will provide you with the information you  need. We also have a telephone helpline and online forum to answer your questions and provide support so please do get in touch.

HPTH UK is the only organisation dedicated to improving the diagnosis, prevention and treatment of hypoparathyroidism and other parathyroid conditions in the UK.  We provide support, information and advocacy for people with all parathyroid conditions, their families, friends and carers. We are also a resource for health professionals with an interest in parathyroids and calcium management and work closely with endocrinologists across the UK.

Our aim is to improve the lives of people living with HPTH and other parathyroid conditions and we seek to achieve this by:

• Providing support, education and advocacy for people with parathyroid conditions.

• Bringing together people with, and interested in, parathyroid conditions.
• Providing accessible information and resources to patients and professionals

• Raising public, government and medical awareness of parathyroid conditions.

• Campaigning for access to best treatment and care

• Assisting in and promoting research

• Fundraising to help us achieve these aims
  

HPTH UK is advised by a team of medical advisors who are experts in their fields and works with and is supported by the Society for Endocrinology and is recognized by the British Thyroid Association and the British Association of Endocrine and Thyroid Surgeons.

We are run entirely by a small, committed team of volunteers ( see below) who are passionate about providing the best possible service to you. Whatever your needs are, we will do our best to provide you with the information and support you need. If we can’t answer your question immediately, we will do the necessary research or speak to our medical advsiors and come back to you.

Becoming a member of HPTH UK is free and means our voice grows stronger, both locally, regionally and nationally.  Please see our membership page to see how you can benefit from joining. We look forward to meeting you!

With best wishes

Liz Glenister
Director

Who's Who at HPTH UK

Liz Glenister, Director
 I set up HPTH UK after my own experience of living for many years with undiagnosed brittle Hypoparathyroidism following surgery for thyroid cancer in 1992. A London teacher since 1976, and with 3 young children, I  had to give up teaching, as well my MA research and was left to manage this rare condition alone. Eventually I discovered that I had an actual  condition with a name and so began the long search for information - none. Years later the HPTH Association in America came into being and I made contact. It was an emotional day. With a loan from them, I set up HPTH UK soon after, in 2005, and got 200 members almost overnight. My aims were initially to bring together people with this rare condition for mutual encouragement and self help, to raise awareness about Hypoparathyroidism in the medical community and to provide the first accessible information. Later joined by the lovely people you see here, I am proud to be part of a national organisation. 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. I am determined that we will make change happen!

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.

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 employed in music/audio journalism as an editor, writer and in IT, I went freelance in 2000 doing much the same thing. Nowadays my work centres around audio 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.