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For the past ten years, Francine Robert has worked to help people with Huntington disease (HD), a fatal genetic brain disorder that slowly destroys both mind and body.
Recently, her dedication was rewarded with a 1999 Community Action Award from the Ontario Ministry of Citizenship, Culture and Recreation. These awards are given to people who, through their leadership and commitment, have been instrumental in effecting positive change for persons with disabilities. Fifteen recipients are selected each year.
Robert will be receiving her award from Lieutenant-Governor Hilary Weston on Wednesday, June 23rd. �I�m quite honoured to have been selected,� she says. Both she and her husband will be flying to Toronto for the presentation ceremony at Queen�s Park.
Robert has transformed the reality of individuals with HD in the Nipissing area and throughout Northern Ontario. Because it is an inherited disorder, HD can devastate generation after generation within affected families. Symptoms of the disease include involuntary movements and progressive difficulty in speaking and swallowing, combined with a range of increasingly severe emotional and cognitive problems.
Through her work as a nurse specializing in genetics, Robert has assisted many Huntington�s families, but in addition to her professional role, she has contributed numerous hours as a volunteer with the Huntington Society of Canada (HSC), offering information and support to families, raising money, and helping to change public attitudes about the disease.
�Working with members of the Huntington�s community has been a very rewarding experience,� says Robert, �and I�m glad our efforts have raised awareness of this disease.�
She also helped to develop HSC�s Northern Service Development Programme, bringing much-needed services to the North, and worked tirelessly to educate health care professionals about Huntington disease. Thanks in large part to Robert�s efforts, there is now an HD clinic in North Bay.
In April, she was elected to the Society�s Board of Directors, where she will bring her skills and experience to the national level.
Joanne Davis, HSC�s Director of Chapter Development, praises the work of Robert: �We are extremely pleased Francine has been recognized for all the work she�s done for the Huntington�s community and the tremendous impact she�s made. The Society is fortunate to have had her as a loyal volunteer for so many years.�
On Thursday, scientists from Harvard Medical School in Boston announced a significant advance in research into Huntington disease (HD), a fatal genetic brain disorder.
Dr. Robert Friedlander and colleagues report in the 20 May issue of Nature that they have succeeded in interfering with the sequence of events that ultimately destroy brain cells in HD.
Currently there are no treatments to slow or prevent the progress of Huntington�s, and this is the first demonstration that a drug can delay the onset of some of the symptoms and extend life span in an animal model. It also has important implications for other neurodegenerative diseases such as Parkinson�s and Alzheimer�s.
Huntington Society of Canada Executive Director Rod Morrison applauds the discovery: �This is an exciting advance, and it�s welcome this news for thousands of Canadian families affected by Huntington disease. It�s wonderful to see investment in research providing such outstanding results.�
The report shows how symptoms in mice can be delayed by blocking an enzyme called caspase-1. The researchers used genetically engineered mice carrying a portion of the mutant HD gene. Normally, these mice show symptoms similar to those in Huntington disease, such as irregular gait, shuddering movements and epileptic seizures. The researchers crossed these mice with a second strain of mouse with a different genetic mutation, which blocked the function of caspase-1.
When the two different strains of mice were cross-bred, their offspring did develop Huntington�s-like symptoms, but these symptoms developed later than in mice with just the mutant HD gene. Friedlander�s group then tried injecting mice with the mutant HD gene with a chemical that blocks the action of caspase-1 and achieved similar results.
By blocking the action of caspase, the researchers found they could delay the onset of the disease until roughly 10% later in life and increase their life span by approximately 20 percent.
According to prominent Canadian genetic researcher Dr. Michael Hayden, �This is an important advance.� He notes that the results will now need to be repeated in other animal models of the disease, and if similar results are obtained, small-scale trials on humans could eventually follow.
In an accompaniment to the Nature article, University of Munich biochemist Christian Haass predicts that �Caspase inhibition may turn out to be the magic bullet against neurodegenerative diseases.�
Once the last few stitches are set, the Huntington�s quilt will be ready to tour Saskatchewan as part of Huntington Disease Awareness Month this May.
The tour will raise awareness of this fatal, hereditary brain disorder which touches the life of one in every thousand Canadians. Ultimately, the quilt will be raffled off at the Huntington Society of Canada�s Annual Conference in October, which will be held this year in Regina.
The quilt is the brainchild of Carol Ellis, Saskatchewan Coordinator of the Huntington Society and a keen quilter. She chose a theme of provincial flowers to reflect the fact that Huntington disease affects families in every province in Canada.
The quilt is hand-appliqued with embroidery accents and the names of each flower and province in counted cross stitch on a blue and white background. Quilters from across Saskatchewan and from as far away as Newfoundland are contributing blocks. According to Ellis, the dedication and workmanship displayed are unique.
The quilt will be exhibited in craft shops, credit unions, stores, and community centres across the province. Ellis encourages families and communities to become involved in the tour: �By selling raffle tickets and displaying the quilt, everyone can play a part in helping to find the cause and cure of Huntington disease.�
Raffle tickets are $2 each, or three for $5. Second prize in the draw will be a framed needlework picture, and third prize will be an afghan done in the Huntington�s colours. Both have been made and donated by members of the Huntington Society.
Proceeds from the raffle will support the Huntington Society�s national programmes in research, service and education.
Co-op stores from across the Atlantic provinces and the Magdalen Islands have joined forces with the Huntington Society of Canada to fight Huntington disease (HD), a fatal brain disorder that slowly destroys both mind and body.
At the Annual General Meeting of Co-op Atlantic, held March 26-27 in Charlottetown, PEI, members agreed to form a partnership with the Huntington Society. Participating co-op stores in Nova Scotia, Prince Edward Island, New Brunswick and Newfoundland will display public awareness material during May, which is �Huntington Disease Awareness Month�, and sell Amaryllis plants in November as part of a national fundraising effort.
�We�re proud of our new partnership with the Huntington Society of Canada�, says Eric Claus, CEO of Co-op Atlantic. �Huntington�s is a devastating disease, and there are many families living with this awful illness in communities throughout the Atlantic provinces. Co-op stores have a strong tradition of supporting our local communities, and we�re very pleased to participate in the fight against HD.�
The Huntington Society of Canada is a national network of volunteers and professionals working to find new treatments and ultimately a cure for Huntington disease, and to improve quality of life for people with HD and their families.
�This partnership will give a tremendous boost to our efforts,� says Stephen Hurst, President of the PEI Chapter of the Huntington Society of Canada and manager of the Kensington Co-op, who initiated the project. �Volunteers throughout the Atlantic provinces have been leading the fight against Huntington disease for 25 years. We�re delighted to have the co-op system join us.�
Anyone who would like further information on Huntington disease can visit their participating Co-op store and pick up a brochure, or call the Huntington Society toll free at 1 800 998-7398.
The Huntington Society of Canada and the Medical Research Council of Canada (MRC) are pleased to announce the creation of a new research award for Huntington disease, a lethal, inherited neurological disorder that touches the life of 1 in 1,000 Canadians.
"This is a very exciting time for Huntington's research," says Rod Morrison, Executive Director of the Huntington Society of Canada, "and we're enormously pleased to be working together with the Medical Research Council. Our new partnership will certainly accelerate the search for solutions to HD."
The discovery of the gene that causes Huntington disease in 1993 has opened up many avenues of exploration into potential treatment, prevention, and cure, and the past five years have seen numerous scientific breakthroughs.
Together, the Huntington Society and the MRC will fund a full-time post-doctoral researcher for two years. The recipient of the award will be an outstanding young Canadian selected through MRC's rigorous peer-review process.
This research is made possible by the Partnership Challenge Fund, a $7 million collaborative effort between the MRC and 23 charitable and non-profit groups, including the Huntington Society, to gain new knowledge through health research.
According to Dr. Henry Friesen, President of the MRC, "This is an excellent investment for the MRC and our partner, the Huntington Society. We share a common goal: improving the health of Canadians by ensuring excellent training opportunities for Canadian health researchers. It is this new generation of researchers which will tackle the health challenges that lie ahead. They need our support and experience to meet the 21st century head-on."
The Medical Research Council is Canada's leading federal agency in the field of health research. It supports research in a number of ways, primarily through Canadian universities and their affiliated teaching hospitals and research institutes. The Huntington Society has led the fight against HD in Canada since 1973.