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  • 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

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

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2012/06/11 – Huntington Golf Tournament

Join us for another amazing golf event on June 11th at the Earl Grey Golf Club.  Sponsorship opportunities also available.

June 11th at the Earl Grey Golf Club
11:00am – Practice area open
11:30am-12:45pm – Lunch
1:00pm- Shotgun start
5:00pm -Reception – Cocktails and stand up buffet

Spots to fill:
1 single that can join a threesome $300

If you are interested or have friends that are interested please call
Jacob at 403.214.2806

Further information:

Jacob Hendriks
403.214.2806

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2012/05/27 – Team HD in the Scotiabank Charity Marathon

Team HD in the Scotiabank Charity Marathon

May 27, early morning to early afternoon, see http://www.calgarymarathon.com/ for specific locations

Team HD is in the Scotiabank Charity Marathon again for our second time.  Last year we were able to raise $12,800 and this year we hope to raise $20,000 while also increasing the size of our team to raise awareness.  If you want to be part of our team but don’t like running, no problem.  There are various distances in this event – 5km walk or run, 10km run, half marathon and full marathon.

If you don’t want to participate but can help us reach our goal please go to https://secure.e2rm.com/registrant/LocationHome.aspx?EventID=84754&LangPref=en-CA&locationID=84777&Referrer=direct%2fnone to make a secure online pledge.  If you prefer cash or cheque, please still use that website and contact Melissa Lingard for dropping off the donation.

Contact Person – Melissa Lingard – lingard.mel@gmail.com or 403-903-5259

We are definitely looking for sponsors so we can reach our $20,000 goal.  We are also looking for more people to join our team.  When you join our team you will be getting a technical t-shirt with our Team HD logo on it.

2012/06/16 – 2012 HOPE Walk/Run for Huntington disease.

Join us for the fourth annual HOPE Walk/Run fundraiser on June 16th.

Participate:

Volunteer:

Now

Assist with planning.

June 14    4-8 pm

Hand out race packages.

June 15    12-8 pm

Hand out race packages.

June 16    Morning

Assist with the smooth running of the event.

Sponsor/donate:

  • Event sponsor
  • T-shirt sponsor
  • Door prizes
  • Items for participant race bags

Contact

Arlene 403-249-4258

darowan@shaw.ca

2012/04/18 – Caregiver Support Group – third Wednesdays

HD Caregiver Support Group
Southern Alberta Resource Centre
Huntington Society of Canada

The Purpose of this group:

  • To provide education and resources about Huntington Disease.
  • To discuss strategies to support a loved one with HD when they experience physical, emotional and social changes that they cannot discuss or are reluctant to acknowledge.
  • To reflect about changes and identify personal strengths and resiliencies.  Often caregivers get so busy ‘caring’ that they cannot talk about events and changes.  This is a place to do that.
  • To help you and your loved one to develop a social support network, breaking down isolation, another very common pattern in HD.
  • To look at self-care strategies for caregivers.

Given the varying needs of participants, discussion topics vary according to group interests.

Please note this group is exclusively for caregivers.

Caregivers’ are family members of someone with a diagnosis of Huntington Disease.  This includes spouses, siblings, adult children and close friends with whom your loved one has regular contact.

If you are a caregiver, please consider attending as a gift to yourself.  Not only do you deserve it….. you need it!!

  • When: Every third Wednesday of the month, 10:30 a.m. to noon
    Please call or email to confirm the next meeting date.
  • Where: Resource Centre Office: 102 5636 Burbank Crescent SE Calgary, AB T2H 1Z6
  • Facilitator: Karl Lottes MA Registered Social Worker, Resource Centre Director

Further information

Karl Lottes, MA Registered Social Worker
403.532.0609
klottes@huntingtonsociety.ca

General information about Huntington Disease:  www.curehd.wordpress.com and www.huntingtonsociety.ca

2012/03/29 – HD Day Group

HD Day Group

This group is open to people with HD living in the community or in personal care homes or other supportive living housing.  It is a pilot project and we will review the group over the next few months and determine how it will evolve or continue.

Next meeting:  Thursday, March 29th – 1 to 3 pm

Location:  Southern Alberta Resource Centre office.

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