How It All Began

The role of Lorree Adam in the formation of the HD associations in NZ

by Judith Baker, Christchurch

 

It is nearly 30 years since the first N.Z. Huntington’s Disease Association was formed, and many of you will not know about the small group who started what have now become H.D. Associations throughout the country.

 

I would like to acknowledge the great contribution Lorree Adam has made to the founding of the three Associations. Her tireless efforts and dedication have led to a much greater understanding of H.D. in this country and for many families their contact with Lorree was the first ray of hope and encouragement they received.

 

There is not room in this article to acknowledge by name, those members of H.D. families whose dedication resulted in the formation of the H.D. Associations, but hopefully they will be remembered by some of you. As well as caring for their own H.D. family member, they worked for many years to support other H.D. families in their areas. It was not until we were gradually able to afford to employ Field Workers/Social Workers that their burden was eased.

 

Mention should also be made of Professor A.M.O. Veale, Professor of Human Genetics and Community Health, (Auckland) and Assoc. Professor R.J.M. Gardner, Geneticist from Dunedin, who helped and encouraged so many families in those early days. We are now so fortunate to have Professor Richard Faull and his team bringing rays of hope to families.

 

As one of the original members, I would like to share with you the earliest article about HD in a New Zealand magazine and a letter sent out by Lorree Adam to members of the Wellington Association.

 

In October 1978 an article appeared in the N.Z. Women’s Weekly. Part of this article is reproduced below:

 

LORREE ORGANIZES BATTLE AGAINST “FAMILY” DISEASE

Disease comes out of Hiding

By Staff Writer Jenny Wheeler

 

HUNTINGTON’S disease - the rare inherited neurological disorder that killed American folk singer Woody Guthrie - is coming out of the family closet in New Zealand.

 

It’s been hidden away there for at least 100 years, says Rotorua campaigner Mrs Lorree Adam, who is the moving force behind steps to set up a committee to fight the disease here.

 

Mrs Adam was widowed by the illness in May, after nursing her husband at home for the past 15 years.

She estimates the disease was brought here in 1876 - about the same time American physician

Dr George Huntington first identified it in New York.

 

Since then several hundred New Zealand families have probably been affected, through intermarriage with its original carriers.

 

But exactly how many people are threatened here is unknown. And it is this ignorance that Lorree Adam hopes to rectify.

 

It’s a difficult task, for many people either don’t realize they have Huntington’s in the family - or they deliberately keep quiet about it.

 

Important

To add to the difficulties, some doctors do not recognize it and fail to diagnose it correctly.

 

“We’ve just got to get Huntington’s out of the family cupboard,” Lorree Adam says. “Information and counselling are so important in helping people come to terms with it.

 

“We need holiday homes to give families and sufferers a break now and then. We need a Respite Care Centre - like they’ve got in Melbourne - where patients can go for specialized care. And we need moral support for the families affected.”

 

New Zealand has been slow to recognize and understand this illness, described by Woody Guthrie’s widow Marjorie as the “not-so-rare disease.”

 

Through Marjorie Guthrie’s amazing work in publicizing the illness, 39 chapters of the Committee to Combat Huntington’s have been formed in nine countries - including Canada, Australia, England, America and several European nations.

Lorree Adam hopes the day has arrived when a new chapter is opened in New Zealand.

 

Although new drugs have helped in controlling the symptoms of the illness, prevention is still the only cure. However, $US53 million has been allocated for research in America alone, and there are hopes for a cure within the next decade.

 

Lorree Adam has devoted a lot of time and money to publicizing Huntington’s disease. Her phone bill for the last month alone was $100.

 

But there are signs that her efforts are bearing fruit. A New Zealand doctor has recently finished writing a handbook for families affected by the disease. It will be published soon.

 

And in an effort to make the disease more clearly understood to those closest to the victims, she hopes to organize a symposium soon.

 

N.Z.W.W. October 30, 1978

_________________________________________

 

In a letter written about 1982 to members of the Wellington H.D. Association Lorree Adam tells how it all began:

 

Dear Friends and Fellow Members

 

Elizabeth has asked me to tell you about our Association and how it all began.

 

Dr George Huntington, son of Dr Abel Huntington presented the first paper in 1872 in which he referred to a group of cases of familial chorea with which he and his father had all been acquainted.

 

They found three original begetters who had lived in a tiny East Anglian Village of Bures and who sailed to the States in 1630. Today there are approximately 14,000 families affected by Huntington’s Disease in America.

 

95 years later in 1967 the celebrated folk singer Woody Guthrie died in a State Hospital. His mother had died of Huntington’s and two of his three children to his first wife had Huntington’s.

 

Marjorie Guthrie, his second wife decided it was time for “ACTION”.  Marjorie Mazia Guthrie, who began her career as a dancer but in the last 15 years of her life, devoted herself to the awareness of H.D. She founded the Committee to Combat Huntington’s Disease. She was instrumental in creating the world Federation of Neurology’s Research Committee on H.D. She visited countries such as Australia, Belgium, Canada, England, France, Holland, Scotland, West Germany and China and spoke to doctors, students etc, just so that something, anything, could be done for HD.

 

Marjorie died on Sunday, March 13, 1983 with cancer. Her untiring dedication to the fight against H.D. will long be remembered and appreciated. She was a model of courage and devotion for all H.D. families. Her inspiration will be deeply missed.

 

In 1969 I was most fortunate to be writing to Marjorie seeking information on Huntington’s to help nurse my late husband Lawrence Albert Adam. I nursed Lawrie at home for 15 years and in May 1978 after his death I knew it was then my duty to help and assist families in New Zealand. I had learnt a great deal of the progress of this illness during this period.

 

In August 1978, Dr Ian Gibb, Medical Superintendent of Kingseat Hospital phoned me asking if I would counsel Sister Breda Shannon and Miss Joan Campbell as they were working with HD families in Auckland. The beginning of New Zealand’s HD Associations and the beginning of HOPE AND ENCOURAGEMENT for our N.Z. friends.

 

Interviews to N.Z. Women’s Weekly, Sunday News, Auckland Star, Wellington Evening Papers,

Helen McConnochie of Future Indicative brought forth letters and phone calls from Whangarei to Invercargill.

 

I was being supported and encourage by Australia, England and the wonderful Marjorie Guthrie. New Zealand families were uniting and joining together at long last. I spoke at mental hospitals such as Carrington, Oakley, Kingseat and Tokanui. I wrote to other institutions spreading the word and being encouraged by doctors. I spoke to local Doctors, Social Workers and District Nurses in Auckland, Hamilton and Rotorua and supplied much needed printed material.

 

In November 1979 I attended the 1st Australian Conference at the Arthur Preston Centre. A hospital for H.D. patients in Melbourne.  Sister Breda Shannon and Dr Mac Gardner of Otago University accompanied me and there we were overwhelmed by the response of other countries. Specialists such as Dr Edward Bird, Harvard Medical School – Professor George W Bruyn of Leiden – Dr Edmond Chiu, University of Melbourne – Dr Dennis Phillips author of “Living with HD” – Professor Thomas Perry, Vancouver, Canada – Marjorie Guthrie and many more noted people all working for us the Huntington family.

 

We returned home with yet more enthusiasm and groups were established in Auckland, Wellington and Christchurch. In these early days credit must be given to Sister Breda, Mrs Cath Patterson, Social Workers, Auckland Medical School – Joan and Roy Wickham, Marjorie Heads and their fellow members from  Wellington. Judith Baker, Justine Guest, Margaret Woods, fellow members from Christchurch and many many others who worked long hours giving time and effort, and through all their labours we now enjoy the success of our progress to date.

 

In 1981 we held our 1st N. Z. H. D. Seminar in Wellington, which was a huge success and our thanks again to the tireless efforts of Joan and Roy Wickham, Marjorie Heads and members. Stan Long spoke of the interest and progress at Arthur Preston Centre in Melbourne.

 

In 1984 our 2nd Seminar, again in Wellington. I felt at the 2nd Seminar, families appeared closer and a more relaxed atmosphere of open discussions. I was impressed at our ‘At Risk’ people and in particular a remark of “I Am Glad I Was Born”.

 

This remark is of vital importance to me particularly in reference to the new development of the Predictive Testing. I feel it is important for all the ‘At Risk’ to join together and discuss openly their ideas, their thoughts to educate us in what THEY WANT it is their FUTURE. One thing Marjorie was always concerned about was that research would find the fault and she wanted a cure or something in the other hand. We must not be too dominant and push our ideas onto others.

 

We have come a long way and with the help of Professor Arthur Veale who in some ways is a little like Marjorie in his untiring dedication to the fight against H.D. Dr Cyril Chapman and Dr Mac Garner all working for us. Ten years ago where did we turn? “A Cold Brick Wall?” but not today.

 

I have met 100s of Huntington’s patients and their families in Australia and New Zealand, I have listened to extremely sad stories of the PAST. Today stories of sadness are there, but not to the degree of yesteryear. Patients are better cared for and better understood, medications have improved. The ‘At Risk’ understand better the affected parent and is able to see the courage and love an affected parent shows within.

 

We have a long way to go yet, but we have progressed more in 20 years than when George Huntington first issued the 1st paper.

 

The light at the end of the tunnel is burning brighter and thanks to the many, many HD families, to doctors, specialists and scientists, a cure to end this nightmare will come. Hence it is important that our New Zealand families support the wonderful work being carried out by our hard working committees in Auckland, Wellington and Christchurch. We can only achieve success if we all pull together.

 

With love and friendship

Lorree Adam

_________________________________________

 

During those first few years Lorree corresponded with Marjorie Guthrie (the widow of Woody Guthrie the

American folk singer) who started the first support groups in the world (known as Chapters in America).

Marjorie corresponded with H.D. families in many countries offering encouragement and advice and the

following is one of the many letters she wrote to Lorree.

 

National Headquarters                                  Committee to Combat Huntingtons Disease Inc

         TO   MS. Lorree Adam                                                                             250 West 57th Street

      P.O. Box 7018                                                                         New York, New York 10107

     Rotorua                                                                                              (212) 757-0443

     New Zealand                                                                                              March, 4 1981

 

 

Dear Lorree and Friends in New Zealand:

 

I feel so good to be able to send my greetings to all who are meeting in your country for the First Huntington’s Disease Seminar. The topics which you are discussing are extremely important ….and will affect the lives of Huntington patients and their families for years to come, I don’t believe that anyone feels sure that we have answers to all the problems, but through discussion, through listening and exploring, through sharing, we will begin to find our ways to a quality of life that has been too long denied to the HD patients and their families. I wish I were there with you! I always learn so much! But I am there in spirit and I look forward to a report on this challenging conference, which I can share with our organizations and societies in other parts of the world! Thank you dear doctors, dear members, dear friends for your participation. And a very special thank you to your Founder, Lorree Adam who has brought so much HOPE to our families in New Zealand.

 

LOVE & PEACE!

Marjorie Guthrie

_____________________________________________________

 

Sister Breda Shannon was a social worker at Kingseat Psychiatric Unit, Middlemore Hospital, Auckland, and a member of the religious order of Sisters of the Assumption – and Lorree and Breda, together with some members of Auckland H.D. families were instrumental in starting the Auckland H.D. Association. The Wellington Association was formed next, closely followed by Christchurch. Sister Breda worked with H.D. families for several years and when she ‘retired’ returned to her homeland in Ireland five years ago. Lorree lost touch with her, but in 2006 managed to learn of her contact address and wrote to her.

 

Sister Breda replied and part of her letter follows:

 

“……Your letter brought back great memories of my years in New Zealand and our shared interests in helping Huntington’s families and promoting research and support. You were such a special friend who took me ‘under her wing’ from the word ‘go’. Then off we went to Melbourne to the H.D. Conference where we scaled those walls together………… It was good to have your update on people I knew and loved – such brave people, bless them. I have lots of contacts with N.Z. but have not in the H.D. area. Here I am a member of the Irish H.D. Association and always attend our AGM which is a weekend of good input and social get together for families. I am busy mainly with Refugees and Asylum Seekers’ needs, and other calls from our own Congregation – so I have variety and the challenge not to let myself get too busy – not easy!……”

 

A favourite saying of Marjorie Guthrie was:

 

‘It is better to light a candle than to curse the darkness’

 

Over the last 29 years many candles have been lit – and many of you have played a big part in the growth of H.D. Associations throughout the country. It is because of the Associations that we now have Field Workers/Social Workers in most areas, who are able to give support to families when it is needed.

 

We need members from H.D. families to keep the work of the Associations going – we need fresh enthusiasm, fresh ideas and dedication, to continue the work begun in 1978.

 

Please become involved with your local Associations – if there are no Associations there will be no Field Workers/Social Workers specifically for H.D. families.