Jim and Sharon Cameron are actively involved with The Huntington Society of Canada. It is a cause very near and dear to their hearts, having family members with the disease.
On November 9th and 10th, The Huntington Society of Canada held their annual conference at the Intercontinental Hotel in Toronto. Jim and Sharon Cameron attended along with about 350 people from across the country. After a rousing introduction by the Young People affected by Huntington Disease, YPAHD, the conference kicked into high gear.
Renowned scientists Jeffrey Carroll, PhD, an Assistant Professor of neuroscience in the Department of Psychology at Western Washington University and Ed Wild, MRCP, PhD, Clinical Lecturer in Neurology at UCL Institute of Neurology, Queen Square and graduate of Cambridge University in London, presented 3 different times on various facets of the latest experiments attempting to attain a treatment for HD. A multi-prong approach to attacking the disease targets:
- gene suppressants
- gene silencing
- gene therapy
- cell protein and DNA alterations
- deep brain stimulation by electrodes and others
Huntington’s disease is the incurable disease that scientists know the most about. Unlike Parkinson’s, Alzheimers, and ALS, scientists know the cause of HD. This is a tremendous advantage to research towards developing treatment and ultimately a cure.
The movie “Do you really want Know?”, directed by Academy Award Winning Director John Zarisky, was presented at the conference. The Canadian film, supported by TVO and Canada, amongst others, chronicles the discovery of the disease in 3 families and their differing approaches to testing among siblings and children. Dr. John Roder, whose story you can view by clicking on this link, attended the conference with his wife Mary Lou and has significant HD symptoms, was shown continuing to try to live a normal life, working as a researcher in cancer and schizophrenia at Toronto General Hospital. Dr. Jeff Carroll, who has been diagnosed along with 3 of his 5 siblings, was also featured. After learning that he carried the genetic mutation for HD, he changed career paths to become a neurologist, studying under Dr. Michael Hayden at UBC. He is now a world leader in research and along with Dr. Ed Wild edits HD Buzz which is available to the global community in 67 languages and presents easy to read research findings and papers by leaders in the HD scientific community. Dr. Carroll has twins who were the first infants born after pre-implementation genetic diagnosis, their embroyo screened for the mutation, and implanted to ensure the children cannot get HD.
There were a number of helpful seminars on how to better communicate with HD patients at various stages and assist caregivers. The active participation by young people in the YPAHD throughout is an encouraging sign that the tireless work by the many volunteers will continue and flourish into the future. The world wide HD community is organizing to record a data base to assist researchers to select participants in drug and therapy clinical trials, which will be starting soon.
On Friday night, many attendees joined friends of the cause at the Hockey Hall of Fame cocktail reception, with its many interactive exhibits thrilling young and old. Saturday dinner featured an Awards ceremony where years of service awards were given to caregivers and social workers, and special awards for individuals whose efforts contributed greatly to the cause. 38 Queens’ Diamond Jubilee Medals were also presented at the conference. The awards by the Queen through the Governor General of Canada are presented to 60,000 Canadians who have made a significant contribution to a particular province, territory, region or community within Canada. Our own Jim Cameron was thrilled to be one of the recipient’s of this medal, in recognition of his fund-raising efforts for the Huntington Society of Canada. We’re all very proud!
The conference closed with one slide: Drugs are on the way.
The conference was a tremendous success and provided inspiration and hope for all who attended for an eventual world without Huntington’s.