How It All Began

Palmerston North

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 163O. Today, there are approximately 14,OOO 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 Huntingtons.

Marjorie Guthrie his second wife decided it was time for "ACTION". Marjorie Mazia Guthrie, who began her career as a dancer but who in the last 15 years of her life, devoted herself to an awareness of HD. 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,student's etc. just so that something, anything, could be done for HD.

Marjorie died on Sunday, March 13, l983 with cancer. Her untiring dedication to the fight against HD will long be remembered and appreciated. She was a model of courage and devotion for all HD 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 encouraged 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 was invited to attend the 1st Australian Conference at the Arthur Preston Centre. A hospital for HD 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 of Harvard Medical School, Professor George W. Bruyn of Leiden, Dr Edmond Chiu of University of Melbourne, Dr Dennis Phillips, author of "Living with HD" , Professor Thomas Perry, Vancouver, Canada , Marjorie Guthrie and many more noted people are 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 Wellington. Judith Baker, Justine Guest, Margaret Woods, fellow members 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, Margorie 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. So it is important that the young help us to help them. 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 HD, Dr Cyril Chapman and Dr Mac Gardner all working for us. Ten years ago where did we turn? "A Cold Brick Wall?" but not today.

I have met lOO's Huntington's patients and their families in Australia and New Zealand, I have listened to extremely sad stories of the PAST. To-day 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 understands 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 2O 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

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