Important News from Minister Ambrose

Looking for Volunteer Board Members

Do you want to donate your time and skills to a great cause? Join us in our exciting journey of changing history for all Canadian Chiari patients!

CCA is looking for Volunteer Board Members with experience in Finances, Fundraising, Tech Support, Marketing and other skills!

We also have volunteer positions to assist with various projects such as our Walks Across Canada, Public Relations, and more. Students will be provided hours towards their high school credit.

Submit your resume, letter of interests (what you want to help with), and position you are applying for to contact@chiari.ca. We look forward to hearing from you!

New CCA Director Announcement

The CCA is pleased to welcome our newest Executive Director, Bonnie Szirtes. Bonnie brings many years of leadership experience in the Government sector. For more details on Bonnie's story please refer to her bio under " Our Directors".

We would also like to announce the departure of Janet Hussey and Cathy Crick. Both have made great contributions to our association. They have chosen to part with CCA to attend to personal matters. We thank them both for their dedication over the past year and a half.

The story behind the purple laces in Barry's Bay

This purple laces story was submitted by Jackie Recoskie of Barry's Bay, Ontario. This newspaper story appeared in the local paper on March 26, 2014.

CCA Volunteer Becomes CORD Ambassador

CORD (www.raredisorders.ca) has asked CCA's Jenn Mathewson to be an Ambassador. She has been working with CORD for a few years learning how to best advocate for the Chiari community, help change the Orphan Drug Policy and much more. This is a HUGE step not only for Jenn but really for the Chiari community. As Ambassador, Jenn will be asked to share her chiari story, help promote their strategy, participate in awareness events, and respond to relevant media inquiries. Health Canada is usually present at these awareness events, along with Doctor's, researchers, politicians and pharmaceutical companies. Jenn is very honoured that they have asked her to fill this role.

New home of the CCA

Welcome to the new home of the Canadian Chiari Association (CCA) website. We hope you will find the information provided on this site helpful. Please send us an email to let us know what you think of our new site. If you have any ideas for improvement that you would like to see or chiari stories that you would like share and have posted here, please send us an email on the Contact page. As events become known we will be posting the event information on the Events Page.

TV News coverage

This Chiari News story appeared on the Global TV evening news the night of Feb 15, 2014.

News coverage from inside Halton

Excerpt from:
Whitby This Week
By Parvaneh Pessian

BROOKLIN -- If Melanie Green is looking for a quick answer to a parenting question, she can rely on friends she’s met through the Facebook group Brooklin Moms.

Sitting at more than 1,300 members currently, the group welcomes members to engage in discussion on various topics, including “mom-related help.”

Recently, the Brooklin resident found a new use for the handy social media tool when she helped a fellow member, Tracey Vonsick, find information she was desperately seeking.

“One of the moms in the group had stated that she had been recently diagnosed with a rare brain condition called chiari malformation and she was overwhelmed because there’s very little information out there about it,” said Ms. Green.

Read the full story at: Inside Halton

News coverage from the Durham region.

Excerpt from:
Whitby This Week
By Parvaneh Pessian

WHITBY -- When Janet Hussey was diagnosed with chiari malformation, she had no idea what it was.

But as the Whitby woman started talking about the rare brain condition with others in the community, she quickly learned she wasn’t alone.

“I was very surprised to learn there are so many others going through similar experiences,” says Ms. Hussey, who suffered from various symptoms of the disorder for 20 years before her diagnosis in 2011.

Chiari malformation is a condition in which brain tissue extends into the spinal canal. While some patients show no symptoms, others experience severe headaches and neck pain, as well as difficulty swallowing, dizziness, and muscle weakness. These symptoms are often attributed to other more common conditions, which can lead to frequent misdiagnoses.

Read the full story at: Whitby This Week

Disclaimer:  The material presented on this site is for information ONLY and does not constitute medical advice.  For diagnosis and treatment options please consult your healthcare provider.  The Canadian Chiari Association (CCA) does not recommend or endorse any one treatment, procedure or product.

The CCA aims to increase awareness of Chiari Malformation across Canada and to provide its members with information to help them in their daily lives.  As such, this site may contain third party links and/or information available as PDFs.  The CCA takes no responsibility for the accuracy or currency of these sources.  Visitors who use the information on this site do so at their own risk.