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2011/10/15 – Calgary’s Largest Oktoberfest Party – last chance for tickets

Join 450 of your best friends at the Red and White Club for Oktoberfest, a party benefiting both the Huntington Society of Canada and the Brain Tumour Foundation of Canada.

Where else can you have this much fun for only $25?

Saturday October 15, 2011
6:30 p.m. – Doors Open
8:30 p.m. – The Ad Hoc Band goes on.  Yes this is the same fabulous band we have had at many events!  Everyone LOVES them and their energy.
9:00 p.m. – German fare served.

Red & White Club (north end of McMahon Stadium) – 1833 Crowchild Trail NW – near the Banff Trail C-Train station. 

• Bring a group or feel welcome to come as a single and make new friends.
• Prize for the best costume, so dress German or come as you are.
• German beer is being imported specifically for this event.  Cash Bar.
• 50/50 draw
• Live auction

For tickets ($25), contact:  Dee Cunningham 403.474.2762
 

Please also help us spread the word so that we can make this another sellout event:  Oktoberfest 2011 poster.

Help us make this blog better.

2011/08/18 – Community Consultation on Affordable Housing

You are invited by the Accessible and Affordable Housing Working Group of the Accessible Housing Society  to a community consultation promoting secondary suites as a housing option for persons with disabilities.

August 18, 2011

1:30 – 3:30 p.m.

CNIB

15 Colonel Baker Place NE, Calgary

RSVP 403-242-6672 ext 123

The Accessible and Affordable Housing Working Group was created to function as a catalyst for change, to educate, and to strategize on how our Calgary communities can best address the needs for adequate, appropriate, accessible and affordable housing. The working group is a diverse mix of people that includes individuals with lived experience; professionals involved in civic, social service and housing issues; representatives from the private sector; and people from the community at large – all dedicated to the expansion of affordable and accessible housing in our Calgary communities.

2011/08/16 – HDSA Caregiver’s Corner webinar invite

As there are some caregivers that are not attending the Caregiver Group here, I thought it would be good to make it available to people generally.

The Huntington’s Disease Society of America invites you to attend a new Caregiver’s Corner webinar on TUESDAY, AUGUST 16 at noon EDT.  (10:00 a.m. Calgary time)

The August Caregiver’s Corner discusses examples of crisis situations reported by HD families and caregivers and introduces de-escalation strategies. Participants will learn to identify cues for common problem behaviors, including irritability and aggression. They will also learn practical strategies to address and de-escalate crisis situations, with a focus on maintaining safety.

The webinar will be presented by Arik Johnson, PsyD. Dr. Johnson is a licensed clinical psychologist and works with the HDSA Center of Excellence at UCLA. He presented several workshops at the HDSA 26th Annual Convention in Bloomington, MN, and has spoken about behavioral issues in HD at several regional symposiums. Dr. Johnson is also involved with his local chapter governance and recently joined the HDSA Board of Trustees. The webinar will run one hour with time at the end for questions.

Caregiver’s Corner is designed to provide information, resources and support for caregivers so they are better able to face the daily challenges of living with HD.

If you cannot join us on Tuesday, you can still view this presentation at your leisure by visiting the HDSA web site (www.hdsa.org) approximately one week after the live webcast.   A link in the Frequently Used Shortcuts section of the HDSA home page will take you to the webinar.

Participating in the Webinar is very easy. All you will have to do is go to the link you receive after you register. If this is your first Webinar, we recommend that you log on five minutes before the start of the Webinar as it may take a few minutes for the process to complete.

This webinar series is made possible by an educational grant from Lundbeck.

Title: “HDSA Caregiver’s Corner” – Crisis Situations & De-Escalation Strategies

Date: TUESDAY, AUGUST 16, 2011

Time: NOON – 1:00 PM EDT

Register now by clicking the link below:

https://www2.gotomeeting.com/register/114008058

After registering you will receive a confirmation email containing information about joining the Webinar.

System Requirements

PC-based attendees

Required: Windows(R) 2000, XP Home, XP Pro, 2003 Server, Vista

Macintosh(R)-based attendees

Required: Mac OS(R) X 10.4 (Tiger(R)) or newer

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

Family curse. BBC story on genetic testing for breast cancer.

http://www.bbc.co.uk/news/health-14135296?utm_source=twitterfeed&utm_medium=twitter