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    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.

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

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    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

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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.

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