• Enter your email address to subscribe to this blog and receive notifications of new posts by email.

    Join 37 other followers

  • Chapter

    President:: Elisha Chin
    We are volunteers raising funds and awareness for a treatment and ultimately a cure for Huntington disease. While this promising research is ongoing, we try to improve the lives of families affected by HD.

    Check out our Wish List.

             

    We also work closely with HSC's Resource Centre Director.

  • Resource Centre

    Southern Alberta Resource Centre
    Karl Lottes, MA, RSW

    102,  5636 Burbank Crescent SE, Calgary Alberta T2H 1Z6
    Westech Building

    Telephone: 403-532-0609
    Cell: 403-801-3459
    Fax: 403- 532-3952

  • Huntington Society of Canada

            

  • HD Buzz

    HD research news.  In plain language.  Written by scientists. For the global HD community.

  • Meta

  • Advertisements

HSC National Conference News

Toronto is hosting this year’s HSC National Conference.  If you are not attending, follow along on social media:

Twitter: Web:
#HSCTO2012 Huntington Society of Canada National Conference, Toronto 2012
#YPAHDDAY2012

 

Young People Affected by HD Day at HSC National Conference 2012
@HuntingtonSC Huntington Society of Canada
@CureHDCalgary HSC Southern Alberta Chapter
@HDBuzzFeed HD Buzz
@YPAby_HD Young People Affected by HD
@HDYOFeed HD Youth Organization
@Huntingtons_Doc Do You Really Want to Know? documentary film
@GeneticFairness Canadian Coalition for Genetic Fairness
Advertisements

On the Shoulders of Giants…

Happy Birthday Woody Guthrie!

Perhaps the most famous person to openly suffer from Huntington disease, Woody would have been 99 years old today.  Unfortunately, his life was cut short at age 55 by HD in 1967.  For those too young to know, Woody was an extremely popular, politically active singer-songwriter, best known for the song “This Land is Your Land.”

More significantly for the HD community is the fact that his widow, Marjorie Guthrie, went on to found the Huntington’s Disease Society of America (HDSA) and, in conjunction with Ariel and Ralph Walker founders (in 1973) of the Huntington Society of Canada (HSC) , began to build the international research and support community we see today.  In California, Milton Wexler founded (in 1968) the Hereditary Disease Foundation (HDF) after his wife Leonore’s diagnosis with HD.

“If I have seen further it is only by standing on the shoulders of giants.”  Sir Isaac Newton

From the kitchen tables of these hard working visionaries and selfless leaders, their legacies are the organizations we now know as HDSA, HSC and HDF.   Ralph’s wife, Ariel Walker, continues to actively advocate for HD families through HSC.  Milton and Leonore’s daughter Nancy Wexler, neuro-psychologist and HDF president, led the 20-year study of the 18,000 family members in Venezuela that helped identify the gene marker and gene for HD in1983 and 1993 respectively.  Another daughter, author Alice Wexler has written about and advocated extensively for HD research and families.

Out of necessity, the HD community has pioneered many things and continues to have ripple effects far beyond HD families:

  • Perhaps because they didn’t know better, or perhaps because they did, the HD research community has fostered a spirit of collaboration unprecedented in the often-competitive field of medical research.
  • New technologies developed during the HD gene search have been widely used in mapping genes for other disorders including cystic fibrosis, Parkinson’s, Alzheimer’s, cancer, heart disease and mental illness. These successes helped to launch the Human Genome Project.
  • The predictive testing protocol for Huntington disease has served as a model for other diseases.  With thousands of diseases known to have genetic links, this is becoming more and more important.
  • Much of of our fundraising is at the grass-roots level, conceived and run locally by volunteers.
  • HSC is actively leading the fight against genetic discrimination in Canada as a leader and founding member of the Canadian Council for Genetic Fairness.

Add to this, an enormous international research and support community and millions of volunteer hours spent fundraising, advocating and caregiving and it is no wonder we have come so far so quickly.  Yet there is still further to go.  Celebrate the past and embrace the hope for the future.

Caffeine makes Huntington’s symptoms start earlier?

From HDBuzz

Recent news stories suggest that Caffeine might be harmful to people with the Huntington’s disease mutation, while others claim that Cannabis might be helpful. Here’s the lowdown on the science behind these stories, and why we think that a third ‘C’ – Caution – might be the best medicine when it comes to news stories about HD ‘breakthroughs’.

Read the full article:  http://hdbuzz.net/37

Mary Lou Nicolson Klimek letter to families and friends

July 5, 2011

Dear Friends,

I’m sending this letter to let you know I will be ending my work as the HD Research Coordinator on July 31, 2011. It has been a rewarding 27 years working with you and your families. You have taught me so much as you shared your lives with me. I will remember you always for the wonderful folks you are and the dedication you and your families have given to help fight this disease.

This is a good time for me to move on as the Pharos, Predict and Cohort studies have now ended. Enroll-HD (the continuation of Cohort) will commence this fall, and you will be contacted by my replacement to ask if you will continue.

Carol Pantella will be continuing with her HD Drug Study Research  (2-CARE) so she will always be a good resource person for you.

I am continuing my interest in genetic research at the U of C, but with another investigator in another field.

I leave you with a heavy heart, but with many good memories. I wish you well, my friends. I hope our paths will continue to cross.

With many thanks,

Sincerely,

Mary Lou Nicolson Klimek

A Step Toward Controlling Huntington’s Disease?

From Johns Hopkins Medicine press release:
Johns Hopkins researchers identify a potential new way of blocking activity of gene that causes HD

Johns Hopkins researchers have identified a natural mechanism that might one day be used to block the expression of the mutated gene known to cause Huntington’s disease. Their experiments offer not an immediate cure, but a potential new approach to stopping or even preventing the development of this relentless neurodegenerative disorder.

Read the full news release:
http://www.hopkinsmedicine.org/news/media/releases/a_step_toward_controlling_huntingtons_disease

BBC accompanies Nancy Wexler to Venezuela

A BBC story and video from Aug 2010.

Venezuelan village key in search for Huntington’s cure.

The village of Barranquitas in Venezuela has the highest concentration of Huntington’s disease, a devastating brain condition, in the world. The BBC’s Will Grant accompanies a US scientist there as she continues her life’s work to find a cure.

story:  http://www.bbc.co.uk/news/world-latin-america-10952800

video:  http://www.youtube.com/watch?v=D6LbkTW8fDU&NR=1

Gladstone Scientists Discover Drug Candidate for Alzheimer’s, Huntington’s disease

Promising early research from The Gladstone Institutes at the University of California, San Francisco:

Scientists at the Gladstone Institutes have identified a drug candidate that diminishes the effects of both Alzheimer’s disease and Huntington’s disease in animal models, offering new hope for patients who currently lack any medications to halt the progression of these two debilitating illnesses.

Gladstone Investigator Paul Muchowski, PhD, has identified a new compound called JM6 in experiments done in collaboration with an international team of researchers, and which are being published today in an online article in Cell. In laboratory tests involving mice genetically engineered to model one or the other of the two diseases, Dr. Muchowski’s team found that JM6 blocks kynurenine 3-monooxygenase (KMO), an enzyme that has long been speculated to play a role in neurodegenerative diseases.

Read the rest of the article:

http://www.gladstone.ucsf.edu/gladstone/site/publicaffairs/content/1/720