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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.

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    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

            

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

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Genetic testing and discrimination in Canada

Informed decisions are important when it comes to genetic testing, but Canadians don’t always hear the full story.

Today’s Global News report on “Home genetic testing” appears to be little more than an infomercial for the company selling the mail-in genetic test.  The reporter claims that this test is beneficial to those WITHOUT health insurance.  There is no discussion why the protocols for genetic testing are so rigorous, requiring counselling, waiting periods and other safeguards.  Nor do they mention that once you have the results, you may be unable to find insurance, even non-health insurances.  They do not mention that you may be fired so that you don’t burden the group health plan.  They do not mention that Canadians are the only G8 citizens without protection against genetic discrimination.  Granted, this is a short piece, but I question whether it falls in line with Global News Journalistic Principles and Practices which begins with “Our primary directive is to report accurate, balanced, timely and comprehensive news and information in the public interest.”

On this same day, I also watched the Huntington Society of Canada’s TV advertisement urging protection against genetic discrimination.  This is part of their campaign for Huntington Disease Awareness Month (May.)  The  message:

Do You Really Want to Know?

MY REALITY… I have a 50% CHANCE of inheriting Huntington disease and my genetic test results will tell my fate.

CANADA’S REALITY… Genetic testing is available to all Canadians. WE ARE ALL AT RISK of our genetic information being used against us in Canada. Canada is the only G8 country that DOES NOT PROTECT its citizens from genetic discrimination.

 

What is Genetic Discrimination?

Genetic discrimination occurs when people are treated unfairly because of actual or perceived differences in their genetic information that may cause or increase the risk to develop a disorder or disease.

Genetic information is complicated and should not be used against us. This type of discrimination affects more than just those with Huntington disease, we are all at risk.

Every family has disease hidden in their genetics, so this affects every Canadian.  Take the time to learn about this important issue and to inform your federal and provincial representatives.

Some genetic discrimination resources:

Canadian Coalition for Genetic Fairness

Huntington Society of Canada

USA’s Genetic Information Nondiscrimination Act (GINA) of 2008

Related articles:

Angelina Jolie highlights benefits of genetic testing; But Canadians lack the protection Americans have against genetic discrimination. Press release by CCGF

Young woman faces insurance hoops due to father with Huntington’s

previous posts on Genetic Discrimination

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

Amaryllis sales in downtown Calgary this October

Once again, Brookfield Office Properties and Beta Sigma Phi are coming together to support HSC.  Brookfield has generously donated space in two downtown Calgary office towers and the sorority sisters are volunteering their time and enthusiasm to sell amaryllis kits.

Free quilt draw.  For these sale days only, every amaryllis kit bought will entitle the purchaser to an entry into a draw for one of two quilts.  A draw will take place at the end of the second day at each building.  The quilts have been kindly donated by Deborah Domin at Loopy D’s Quilting & Longarm Studio and Beta Sigma Phi members who participate in the studio’s Linda’s Ladies Quilting Guild.

Credit and debit card payments will now be accepted.

October 16 & 17, 2012 – Suncor Energy Centre

10 a.m. to 2 p.m. at the bottom of the escalators
Quilt draw:  2 p.m. on October 17
150 – 6 Avenue S.W. (formerly called PetroCanada Tower)

October 23 & 24, 2012 – Fifth Avenue Place

10 a.m. to 2 p.m. at the bottom of the escalators
Quilt draw:  2 p.m. on October 24
420 – 2nd Street S.W. (formerly called Esso Plaza)

CREB Charitable Foundation $25,000 for 25 standings update

The Huntington Society’s Alberta Camp Health, Hope, and Happiness (Camp He-Ho-Ha) has been nominated by REALTOR® Jorina McDowell and is in the running against 44 other charities for 5 gifts of $25,000 in the category of Vulnerable Populations.

This morning, the Huntington Society of Canada is ranked 36th with 50 votes.  As of this moment, we need 307 more votes to move into 5th place.  If we finish in the top 5 on October 21, we will earn one of the $25,000 prizes.  We can do it if we really want it!

Don’t forget to remind your REALTOR®  friends and associates to vote daily for HSC’s Camp He-Ho-Ha.  Each CREB member has a minimum of 10 votes per day.

Voting link:   http://cf25for25.creb.com/nominee.php?id=193

Help The Grant Family earn $100,000 for HSC

The CFL and Scotiabank Game Changers is giving $100,000 to the charity that gets the most votes across Canada.  Help The Grant Family support the Huntington Society of Canada by voting for them at this link: https://www.scotiabankgamechangers.com/nomination/?nominationid=291  One vote per day per email address.

Help us earn $25,000 from the Calgary Real Estate Board Charitable Foundation

2012 is the 25th anniversary of CREB® Charitable Foundation. To celebrate this anniversary, the Foundation has launched the $25,000 for 25 program. On behalf of Calgary and area REALTORS®, 25 gifts of $25,000 will be selected by its members.

The Huntington Society’s Alberta Camp Health, Hope, and Happiness (Camp He-Ho-Ha) has been nominated by REALTOR® Jorina McDowell and is in the running against 44 other charities for 5 gifts of $25,000 in the category of Vulnerable Populations.

Each CREB® member and staff in good standing has a minimum of 10 votes per day, which they can allocate in a block or individually.  Voting began September 24 and ends at noon on October 21st.

Please encourage all the REALTORS®  you and your contacts know to vote for the Huntington Society of Canada at this link:  http://cf25for25.creb.com/nominee.php?id=193

Every vote counts.  Making it into the top 5 will be a tough battle as the current rankings (after 1.5 days of voting) show:

Rank

Votes

 
1

1,180

5

188

35

30

Huntington Society of Canada

Day Program upcoming meetings

Day Program for People affected by HD and their family members/caregivers

  • Thursday September 27th
  • Thursday October 25th
  • Thursday November 22nd
  • Thursday January 3rd 2013

All run 130 pm to 330 pm.  Contact Karl Lottes at the Resource Centre to see if this program is suitable for you.