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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

            

  • HD Buzz

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

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This blog is no longer maintained.

Other sources of information:

Southern Alberta

  • Chapter fundraising, advocacy and social events: Elisha Chin   
  • Support: Karl Lottes, Resource Centre Director

Huntington Society of Canada

Research: HD Buzz

Events Calendar – Come Join Us!

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

Access 2 Entertainment companion card – update

As mentioned in an earlier post, Easter Seals Canada manages the Access 2 Entertainment (TM) Card.  This is a fabulous program for those of us who love movies, attractions and recreational opportunities.

If, as the result of a permanent disability, you are unable to participate without a companion, the Access 2 Entertainment Card provides admission for that companion which is either free or nearly free (maximum $3.)  The person with the disability pays regular admission.

This post  is a summary of information believed to be accurate as of today.  However, qualifications, rules and participating venues can change at any time, so always check the www.access2card.ca website for official information.

Participating Theatres and Attractions:

The card is valid at a large number of movie theatres and attractions.  The list of participating organizations is maintained at www.access2card.ca/venues/  Current listings:

Movie theatres in Alberta

  • Cineplex
  •             Odeon, Galaxy, Famous Players, SilverCity, Colossus, Coliseum
  • Empire Theatres
  • Landmark Cinemas
  • Rainbow Cinemas
  • Magic Lantern Cinemas
  • AMC Theatres

Attractions in Alberta:

  • Aero Space Museum of Calgary
  • Art Gallery of Alberta
  • Calgary Zoo
  • Canada’s Sports Hall of Fame
  • Canadian Grain Elevator Discover Centre
  • Canmore Museum & Geoscience Centre
  • Danish Canadian National Museum
  • Edmonton Valley Zoo
  • Esplanade Arts and Heritage Centre
  • Fort Edmonton Park
  • Fort McMurray Historical Society
  • Fort Whoop-Up National Historic Site
  • Frank Slide Interpretive Centre
  • Galt Museum & Archives
  • Jasper-Yellowhead Museum & Archives
  • John Janzen Nature Centre
  • La Crete Mennonite Heritage Village
  • Lougheed House
  • Morinville Musuem
  • Muttart Conservatory
  • Nose Creek Valley Museum
  • Peace River Museum, Archives & Mackenzie Centre
  • Royal Tyrrell Museum
  • Sundre Museum & World of Wildlife
  • TELUS world of Science-Edmonton
  • The Fort Museum of the North West Mounted Police and First Nations Interpretive Centre
  • Ukrainian Cultural Heritage Village
  • Westlock Pioneer Museum
  • Wild Rapids
  • YouthLink Calgary

Application:

Download the application form at www.access2card.ca and follow the instructions.  There is a $20 fee to acquire, replace or renew the Access 2 Entertainment Card which is valid for 5 years.

Medical qualification:

The application form requires that the applicant must be a client of an authorizing health care professional/service provider (see application for list) who attests that:

  1. The client has a permanent disability.
  2. As a result of the disability, the client requires the assistance of an attendant at movie theatres or entertainment venues.

For clients of the Huntington Society’s Southern Alberta Resource Centre, Karl Lottes is qualified to complete the Registered Health Care Provider Information required on the application.  He can be reached at 403.532.0609.

Good to know:

If you intend to also apply for the Easter Seals’ Disability Travel Card (TM) mentioned in an earlier post, have your health care professional complete both forms at the same time.  If you already have a CNIB ID card or an Easter Seals Disability Travel Card, a photocopy of either one can be submitted as authorization in lieu of completing the  Registered Health Care Provider Information section.

The Disability Travel Card is a similar program operated by Easter Seals through which participating Canadian coach (bus) operators and Via Rail offer reduced fares for companions accompanying persons with disabilities who cannot travel independently.

International Day of Persons with Disabilities

Today is International Day of Persons with Disabilities.  This year, the United Nations has declared the theme to be: Removing barriers to create an inclusive and accessible society for all.

“Over one billion people, or approximately 15 per cent of the world’s population, live with some form of disability.

Persons with disabilities, “the world’s largest minority”, often face barriers to participation in all aspects of society. Barriers can take a variety of forms, including those relating to the physical environment or to information and communications technology, or those resulting from legislation or policy, or from societal attitudes or discrimination. The result is that persons with disabilities do not have equal access to society or services, including education, employment, health care, transportation, political participation or justice.”

Read more

Cross Disability Support & Services Initiative

Cross Disability Support & Services Initiative

The Cross Disability Support Services (CDSS) initiative assists Albertans with disabilities who require specialized services that they are unable to access, or do not qualify for, through other means.  The CDSS initiative provides support for targeted groups of adults with disabilities .

Supports and Services

CDSS provides a diverse range of services across Alberta including:

  • Supporting connections with community services.
  • Promoting independent living skills training and/or mentoring.
  • Exploring volunteer opportunities and recreational supports.
  • Supporting persons managing vision loss.
  • Providing connections to interpreter and intervener services.
  • Supplying adaptive equipment.

Further Information:

http://humanservices.alberta.ca/disability-services/cross-disability-support-services-initiative.html

http://www.c-a-s-s.org/programs/ccla

Community Access for People in Continuing Care Initiative

Did you know this program is available from Alberta Human Services – Disability Services?:

Community Access for People in Continuing Care Initiative

Program Purpose

The goal of the Community Access for People in Continuing Care (CAPCC) initiative is to provide supports to Albertans under the age of 65, living in continuing care centres who are socially and culturally isolated.  Community Access Coordinators focus on individual goals to develop supports to help individuals participate in community activities in an effort to reduce social isolation and develop, maintain and enhance the involvement of family and friends.

Community Access Coordination Services

Community Access Coordinators are available to assist residents in continuing care to become more active in their community.  Individual service plans are developed based on a person’s interests and the activities available in their community. Activities could include: outings with family and friends, volunteer activities, church or spiritual activities, movies or continuing education.

Further information:  Community Access for People in Continuing Care Initiative

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