PRIMARY GOALS OF THE INTERNATIONAL HUNTINGTON ASSOCIATION
– to promote international collaboration in the search for a cure for HD
– to maintain close liaison with the research scientists, who form the Research Group on Huntington’s Disease of the World Federation of Neurology
– to develop and share information and resources among member countries, to avoid duplication of effort
– to assist in organizing and developing new and existing national HD organisations
– to cooperate with other voluntary health agencies and international health organisations
– to publish and distribute an international newsletter to all members and to representatives in those countries where no HD group is not yet organised.
The Association is governed by an Executive Committee (president, vice president, secretary, treasurer, international development officer and two or more additional members) elected by delegates to the IHA conference and workshop convened every second year.
LIAISON WITH SCIENTIFIC COMMUNITY
The IHA partnership with HD scientists around the world is fostered by arranging our biennial meetings concurrently with those of the Research Group on Huntington’s Disease of the World Federation of Neurology.
The research group brings together physicians and scientists from countries around the world. These individuals are seeking improved treatment and an eventual cure, through consultation and sharing of the rapidly increasing body of knowledge about HD. The first meeting of this group took place in 1967 in Montreal, Canada, with the late Dr. André Barbeau as host.
PREDICTIVE TEST GUIDELINES FOR HUNTINGTON’S DISEASE
In 1983, genetic markers closely linked to the HD gene were identified. The discovery of additional genetic markers led to the development of predictive testing programs for HD. Problems with this approach included some inaccuracy as one was not directly assessing for the presence or absence of the genetic defect underlying HD.
In March 1993, the gene causing Huntington’s Disease was identified on chromosome number 4. This means that individuals at risk for HD can now be directly tested to “predict” who will develop the disease. Prenatal testing is also possible. The decision about whether or not to take the predictive test is a deeply personal one. For some individuals this test will provide much desired information about their future. Others will choose not to undergo testing at this time, particularly as there is no effective treatment currently available.
Recognizing that medical, ethical, legal and social issues from the availability of predictive testing, recommendations concerning the use of a predictive test for the detection of HD were drawn up by a committee consisting of representatives of the IHA and WFN Research Group for HD.
The first predictive test guidelines were adopted by each of the organisations at their respective meetings in Vancouver, BC, Canada, June 30 to July 3, 1989, and published in the Journal of the Neurological Sciences (1989;94:327-332) and the Journal of Medical Genetics (1990;27:34-38).
Revision of these guidelines was necessary in view of the important research breakthrough announced in March 1993 of the discovery of the HD gene on chromosome number 4, characterized by an expanded trinucleotide repeat.
The revised Guidelines, have now been approved and published in Neurology 1994;44:1533-1536 and in the Journal of Medical Genetics (1994;31:555-559).
In 2013 at the World Congress on HD in Rio de Janeiro, Brasil, a revised set of guidelines will be voted on.
ESTABLISHED BENEFITS OF THE IHA
– Providing initial support, direction and encouragement to indiviuals/groups wishing to start a national HD lay association
– Offering ongoing support to developing national lay groups
– Facilitating the sharing of resources developed in one country for use by others, to avoid duplication of scarce human and financial resources. A range of videotapes, manuals and resource materials for lay people and professionals is now available in several languages thanks to the generosity of member associations
– Fostering applied research and development of improved care strategies in such areas as: nursing, communication, swallowing, mobility, supportive housing and long-term care
– Encouraging basic and applied research, leading to increased understanding of the basic factors underlying HD and ultimately to improved treatment and an eventual cure. Tremendous strides are being made.
THE MARJORIE GUTHRIE FUND
The Fund was established in 1983, shortly after Marjorie Guthrie’s death, to recognise her outstanding efforts as the founder of the American HD Society, the first in the world and her continuing efforts to initiate HD lay organisations in many other countries. She was a tireless fighter for the HD cause and an inspiration to all who met her.
The Fund was intended to cover the cost of a keynote speaker at future IHA meetings, the focus of these presentations to be innovative new strategies for care.
At the 1995 IHA meeting in Belgium, it was agreed that the Marjorie Guthrie Fund be expanded to support the critical international development work of the IHA. By expanding the mandate of the Fund, it is hoped that resources can be found and made available to assist with the development and support of recent and additional new lay organisations.
THE REMARKABLE HISTORY OF THE IHA
In 1974, the first international meeting took place when the founders of the Canadian HD Society (Ralph Walker) and of the British HD Society (Mauveen Jones) attended the annual meeting of the American HD Society.
This meeting was followed by the first meeting together with the conference of the Research Group in the Netherlands in 1977 organised by the Dutch Huntington Society the “Vereniging van Huntington”, where representatives of six countries were present.
The IHA was established at the international meeting in Oxford (England) in 1979, organised by the Huntington’s Disease Association of the United Kingdom.
In 2003 was planned the World Congress on Huntington Disease in Toronto, Canada. It would have been the first fully joined meeting of scientist and representatives of members and contacts of the International Huntington Association. Due to electricity drop out, the board of the IHA with support of scientists organized an improvised meeting.
Dr. Nancy Wexler, one of the leading HD researchers in the world, made the following comment in a speech at the Huntington Society of Canada’s annual meeting:
“Individual people can make an impact, and you’re a group like this all across the country you make a bigger impact, and when you’re international, you make an even bigger impact. There is absolutely no question that the Huntington movement we’re all part of is considered one of the most successful in the entire world. And what are we? Just individuals getting together and saying ‘this disease cannot get me down, I’m going to conquer this thing’. And we’re going to do it soon. We’re going to do it in the lifetime of ourselves and our children.”
The International Huntington Association and its members believe the IHA will be a key factor in achieving that goal.
BIENNIAL MEETINGS TO DATE
*1977 – Netherlands
*1979 – England
*1981 – Belgium
*1983 – Canada
*1985 – France
*1987 – Italy
*1989 – Canada
*1991 – Wales
*1993 – USA
*1995 – Belgium
*1997 – Australia
*1999 – Netherlands
*2005 – UK
*2007 – Germany
*2009 – Canada
*2011 – Australia
*2013 – Brazil