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Issue 91, December 2005

Twelve Years On ...

Dorothy Tortell, Social Worker

On the first of March 1993 I started work as the Social Worker for the Wellington Huntington's Association. It is now time for me to step down. As I look back over the past twelve years, so many memories come flooding back: it is a time for me to remember all the people with whom I have been so lucky to work with, all the challenges that we have faced, all the sadness, and all the wonderful successes and happy times that I have shared with you all.

The major achievements that stand out to me, as I look back, are the publication of the three widely acclaimed books by the Association in 1995,1997 and 2000; the Huntington’s Conferences, with their high calibre speakers; the annual Camps for young people from New Zealand Huntington’s families; my presentation of papers at three International Huntington’s Conferences; obtaining funding to increase the number of Social Workers to four; and the setting up and opening of Amaryllis House in Lower Hutt in 2004. During this time, predictive testing has become a reality, and New Zealand has become a firm part of the international community through the research of Professor Richard Faull and his colleagues.

Often it has been hard; the only thing that has made it possible at those times, and so rewarding all the time, are the people. Thank you to all those with whom I have worked during these twelve years – my colleagues, associated professionals, committee members, but most of all, the Huntington’s families and caregivers. I feel privileged to have been able to meet, support, advocate for and walk the Huntington's journey with you all. I have learnt so much and will always be grateful for the openness and generosity that you have all shown in sharing your knowledge and experience with me and in placing so much trust in me. I have loved seeing the young people grow up with the Camps, and support each other to "go for their dream” in spite of Huntington's. I continue to be inspired by those who were prepared to share their stories and knowledge in the books and at the conferences, and the way in which all of you live fulfilling, loving and dignified lives in the shadow of this disease.

As I look back, I particularly remember the invaluable help Margery Heads, from whom I took over the position, gave me in my first months. It was from her that I slowly started to learn about Huntington's and to understand what my position entailed. I have tried to build up what she had started in her years in the role. The support, encouragement and friendship of three very dedicated and caring Chairpersons - Judy Lyon, Virginia Nees and Graeme Bradley – has been essential, as has the involvement of all the committee members over the years. The work of Carol Dring and the team that she heads in organising the Conferences has been an example of exemplary efficiency and concern for detail; many helpers over the years, including some from a Huntington’s background, have made an immense contribution to the young people’s Camps.

Over the past twelve years I have worked with many fine professionals from various disciplines, who have often challenged me, but also supported me and provided invaluable guidance and advice. I should particularly mention the excellent working relationship that I have enjoyed with the team at Central Regional Genetic Services, Wellington Hospital. I am grateful to Healthcare of New Zealand Ltd and the Ministry of Health for their part in making the dream of Amaryllis House a reality, and to the way in which Margaret Simmons and her staff are continuing in this.

My sincere best wishes to the Wellington Huntington’s Association and to the Huntington’s community throughout New Zealand. I am so grateful to all those involved in allowing me to make my mark on the Association. I shall enjoy continuing to see how the Association grows and changes in the coming years, and to hear of your inevitable successes.


I, along with many others, would like to thank Dorothy for the time she has put in for those people outside of the Wellington Area.

Especially the help and advice given to myself over the years for my late wife Josephine

Graham Taylor


Dorothy Tortell has been a Social Worker with the Wellington Huntington’s Disease Association for 13 years, in recent years as the Senior Social Worker as the Association has employed more staff.

Her decision to leave this position has made us all reflect on the impact she has had on our lives and all she has achieved during this time.

Dorothy’s enthusiasm and passion to help HD families in a variety of ways is truly incalculable.

She has been the driving force for many projects that the Association has undertaken during this time, some of which have attained worldwide recognition:-

  • The Young Peoples Camp – Dorothy has spoken at several overseas conferences on these camps.
  • The three books the Association has published – The latest one “Huntington’s and Me” A guide for young People” by Alison Gray has been published in 3 other languages.
  • Amaryllis House – the dedicated unit for people with HD. This unit has proved to be an outstanding success.
  • Conferences – five wonderful conferences with great local and international speakers.

Dorothy’s knowledge of Huntington’s Disease, her professionalism, dedication and caring attitude will be missed by many. The friendships she has made will surely continue forever.

Dorothy’s determination to leave no gaps in the care that families get from the other Social Workers after she leaves is to be admired and reflects the Associations goal –“To provide the best possible support and information to those with Huntington’s Disease, their families, caregivers and professionals.”

We would like to wish Dorothy well for her future endeavours, and hope she can now find the time to go on a few overseas trips with her husband as she hoped to be able to do many years ago!

Thank you Dorothy for all you have done.

Elaine and Graeme Bradley.

Dorothy Tortell

As Social Worker for the Huntington’s Association in the Wellington region, Dorothy’s service to the Huntington’s community as she leaves her current position as Senior Social Worker will be remembered and appreciated by many. Dorothy has proactively carried out her duties for the Association by providing the support and advocacy for those with Huntington’s, their families and caregivers and by extending information through conferences, books, and camps.

Families will remember Dorothy for her help and assistance in many instances such as:-

  • Recognising the need and arranging respite care to provide a much-needed break for carers from 24-hour home care.
  • Helping a carer with arrangements for her husband in his final days.
  • Working with a family when the HD sufferer is having a difficult time with psychiatric symptoms.
  • Listening to a young family member who is having difficulty with his girlfriend when he is unable to talk to his mother who is unable to communicate due to her HD symptoms.

Dorothy has not only helped families and those with HD in our Wellington region but has answered requests from throughout the country, from Northland to Southland and has always been available to help.

Thank you Dorothy for your wonderful service.

Cecil O’Neale
Chairperson - Huntington’s Association (Wellington) Inc.

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