Huntington Disease Medical Clinic at UBC Hospital
Huntington Clinic multi-disciplinary team. From left to right: Dr. Andrew Howard, Kevin Glenney, Dr. Lynn Raymond, Belinda Walle, Joji Decolongon, Susan Creighton, Rachelle Dar Santos, Susan Tolle, Dr. Aaron Sturrock, Lana Sullivan
Huntington Society Click here to donate to the Huntington Society
Why Huntington Society?
Huntington's disease is something that has profoundly touched my family and had an immense impact on the way our family has been able to communicate. My father's grandfather and father were both stricken with the disease and suffered early death. My father's sister and one of his brothers have also been diagnosed with the disease. In January 2010 my dad shared with us, for the first time, the fear he's had of passing it on to me and my sisters. Though we have not been tested, the disease typically appears in the late 20's to early 30's. My dad will be 60 this year and has shown no signs. When I told him I was going to ride my bike across Canada he asked if Huntington's would be something I'd like to ride for and of course I said YES!
What is Huntington Disease (HD)?
HD is an inherited brain disorder that causes cells in specific parts of the brain to die. Huntington disease is a genetic disorder. About one in every 10,000 has HD, but one in every 1,000 are touched by HD whether at risk, as a caregiver, family member or friend. The HD gene is dominant, which means that each child born to a parent with Huntington disease has a 50% chance of sharing the same fate. The disease leads to complete incapacitation and, eventually, death. At the moment there are no treatments that will slow down or stop the disease in humans. But hope for a meaningful treatment has never been more real. In recent years, basic research has dramatically increased our knowledge of HD. Various promising treatment strategies are now in the drug discovery pipeline. More than ever, now is the time to step up the fight against HD.
Website: www.huntingtonsociety.ca
Click here to donate to the Huntington Society
To donate by mail, send a cheque to:
Huntington Society of Canada
c/o Kevin's Trans-Canada Ride
151 Frederick St, Suite 400
Kitchener, ON
N2H 2M2
Phone: (519) 749-7063 begin_of_the_skype_highlighting (519) 749-7063 end_of_the_skype_highlighting
Huntington Study Group
The HSG is made up of clinical researchers in North America, Europe, Australia, New Zealand and South America, who care for HD patients and families and who are working diligently to combat this disease. Several new research trials are underway or being launched in 2010. We ask you to visit our website for monthly updates and greatly appreciate your time and effort in seeking treatments that make a difference for Huntington diseasewww.huntington-study-group.org
HD Trials
There is hope on the horizon for people with Huntington's Disease. There are many Clinical Studies underway, and a number of potential therapies may move into Clinical Trial phases in the very near future. Volunteers are needed for ongoing trials and many more will be needed for future trials.
HDTrials.org has been created to enable clinical trial participation, the HDTrials.org web site will provide quick notification to Huntington families of opportunities for participation in clinical trials and studies through a confidential email list.
www.hdtrials.org
HD Roster
The National Research Roster for Huntington Disease Patients and Families was established in 1979. The goal of the Roster is to help researchers learn more about Huntington disease. To accomplish this goal, the Roster has involved nearly 3,000 families in Huntington disease research. As a participant in the National Research Roster for Huntington Disease Patients and Families (HD Roster) you are invited to participate in the Huntington Disease Patient Care Survey. This survey is being conducted to obtain the names and addresses of any medical doctor or professional involved in the care or treatment of Huntington Disease. The information collected in the survey will be used to help make researchers, physicians and other HD care professionals aware of current HD research.
www.hdroster.iu.edu
CHDI
CHDI’s goal is to increase the understanding of Huntington’s disease (HD) and to hasten the development of therapies. We collaborate with academic and industrial scientists throughout the world. This website highlights activities that may be of particular interest to people engaged in or contemplating HD research and provides information on targets, compounds, and research materials that HD researchers may find useful.
www.highqfoundation.org
Neurological Health Charities Canada
NHCC is a collective of organizations that represent people with chronic, often progressive, neurological and/or neuromuscular diseases, disorders, conditions and injuries (brain disorders) in Canada. The NHCC’s role is to provide leadership, evaluating and advancing new opportunities for collaboration specific to advocacy, education and research projects, related to brain health.
www.mybrainmatters.ca
CCGF/CCEG
The CCGF/CCEG is a coalition of organizations dedicated to preventing genetic discrimination for all Canadians. The Coalition is deeply concerned about discrimination against individuals based on their genetic make-up. We are united to educate Canadians about genetic discrimination and to influence governments both federal and provincial, and other relevant organizations to create change.
www.ccgf-cceg.ca/en/about-ccgf
Canadian Movement Disorder Group
CMDG is a network of Movement Disorder Clinics across Canada to provide the appropriate facilities to treat patients with movement disorders, and to conduct clinical research trials in movement disorder patients.
www.cmdg.org/AcrossCanada/acrosscanada.htm
Huntington's disease is something that has profoundly touched my family and had an immense impact on the way our family has been able to communicate. My father's grandfather and father were both stricken with the disease and suffered early death. My father's sister and one of his brothers have also been diagnosed with the disease. In January 2010 my dad shared with us, for the first time, the fear he's had of passing it on to me and my sisters. Though we have not been tested, the disease typically appears in the late 20's to early 30's. My dad will be 60 this year and has shown no signs. When I told him I was going to ride my bike across Canada he asked if Huntington's would be something I'd like to ride for and of course I said YES!
What is Huntington Disease (HD)?
HD is an inherited brain disorder that causes cells in specific parts of the brain to die. Huntington disease is a genetic disorder. About one in every 10,000 has HD, but one in every 1,000 are touched by HD whether at risk, as a caregiver, family member or friend. The HD gene is dominant, which means that each child born to a parent with Huntington disease has a 50% chance of sharing the same fate. The disease leads to complete incapacitation and, eventually, death. At the moment there are no treatments that will slow down or stop the disease in humans. But hope for a meaningful treatment has never been more real. In recent years, basic research has dramatically increased our knowledge of HD. Various promising treatment strategies are now in the drug discovery pipeline. More than ever, now is the time to step up the fight against HD.
Website: www.huntingtonsociety.ca
Click here to donate to the Huntington Society
To donate by mail, send a cheque to:
Huntington Society of Canada
c/o Kevin's Trans-Canada Ride
151 Frederick St, Suite 400
Kitchener, ON
N2H 2M2
Phone: (519) 749-7063 begin_of_the_skype_highlighting (519) 749-7063 end_of_the_skype_highlighting
Huntington Study Group
The HSG is made up of clinical researchers in North America, Europe, Australia, New Zealand and South America, who care for HD patients and families and who are working diligently to combat this disease. Several new research trials are underway or being launched in 2010. We ask you to visit our website for monthly updates and greatly appreciate your time and effort in seeking treatments that make a difference for Huntington diseasewww.huntington-study-group.org
HD Trials
There is hope on the horizon for people with Huntington's Disease. There are many Clinical Studies underway, and a number of potential therapies may move into Clinical Trial phases in the very near future. Volunteers are needed for ongoing trials and many more will be needed for future trials.
HDTrials.org has been created to enable clinical trial participation, the HDTrials.org web site will provide quick notification to Huntington families of opportunities for participation in clinical trials and studies through a confidential email list.
www.hdtrials.org
HD Roster
The National Research Roster for Huntington Disease Patients and Families was established in 1979. The goal of the Roster is to help researchers learn more about Huntington disease. To accomplish this goal, the Roster has involved nearly 3,000 families in Huntington disease research. As a participant in the National Research Roster for Huntington Disease Patients and Families (HD Roster) you are invited to participate in the Huntington Disease Patient Care Survey. This survey is being conducted to obtain the names and addresses of any medical doctor or professional involved in the care or treatment of Huntington Disease. The information collected in the survey will be used to help make researchers, physicians and other HD care professionals aware of current HD research.
www.hdroster.iu.edu
CHDI
CHDI’s goal is to increase the understanding of Huntington’s disease (HD) and to hasten the development of therapies. We collaborate with academic and industrial scientists throughout the world. This website highlights activities that may be of particular interest to people engaged in or contemplating HD research and provides information on targets, compounds, and research materials that HD researchers may find useful.
www.highqfoundation.org
Neurological Health Charities Canada
NHCC is a collective of organizations that represent people with chronic, often progressive, neurological and/or neuromuscular diseases, disorders, conditions and injuries (brain disorders) in Canada. The NHCC’s role is to provide leadership, evaluating and advancing new opportunities for collaboration specific to advocacy, education and research projects, related to brain health.
www.mybrainmatters.ca
CCGF/CCEG
The CCGF/CCEG is a coalition of organizations dedicated to preventing genetic discrimination for all Canadians. The Coalition is deeply concerned about discrimination against individuals based on their genetic make-up. We are united to educate Canadians about genetic discrimination and to influence governments both federal and provincial, and other relevant organizations to create change.
www.ccgf-cceg.ca/en/about-ccgf
Canadian Movement Disorder Group
CMDG is a network of Movement Disorder Clinics across Canada to provide the appropriate facilities to treat patients with movement disorders, and to conduct clinical research trials in movement disorder patients.
www.cmdg.org/AcrossCanada/acrosscanada.htm
