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Rare Disease Day

Today is Rare Disease Day!

Rare Disease Day is to raise awareness for rare disease patients and the impact on the lives of patients and their families. 1 in 12 Canadians has a rare disease, while many more go undiagnosed or misdiagnosed. Chiari Malformation can be congenital or acquired and it is only one of thousands of rare diseases that can occur in families.

 For more information about this global awareness effort, please visit www.rarediseaseday.org

Chiari Awareness Walks Across Canada - 2015

On September 12th and 19th, the CCA held walks in Whitby ON, Ottawa ON, Kingston ON, Matheson ON, and White Rock BC.  Although there was rain, it did not hamper the spirits and enthusiam of those that gathered to help spread awareness for chiari and also to raise money for our financial assistance programs.  In all, we were able to raise approx. $5,700 which was a great accomplishment.

Also we were successful in getting the Toronto CN Tower, Ottawa City Hall and Niagara Falls lit purple in honour of September being Chiari Awareness Month.

We would like to thank our many volunteers, organizers walkers, and donors for helping make these events memorable and successful. 

We look forward to even bigger events in 2016.

 

Meet Logan - Chiari Superhero

We would like you to meet Logan - our Chiari superhero! While his Mom was pregnant with Logan in 2009, the doctors thought Logan might have Downs Syndrome. Further testing showed that he did not but his neck measurements were not normal. He was born 2 weeks early but it was a normal birth. Logan's Mom knew something wasn't right from the beginning. He never met any of his milestones. He had strange episodes where he turned gray and his body would go limp. He had many tests and hospital visits but doctors were unable to pinpoint anything.

At the age of 2, Logan had his first MRI where they were given the diagnosis of Chiari Malformation. Two weeks later he was undergoing his first decompression surgery. It was a 6 hour operation and he was released 5 days later only to be readmitted the next day for a CSF leak followed by a revision surgery. He was released again however a few day later but again another leak. This time he developed meningitis. He received a PIC line and was hospitalized for another 4 months. He went home but continued to have random hospitalizations until they went for a second opinion at Toronto's Sick Kids where it was decided that he needed a second decompression surgery. Logan was hospitalized for 9 weeks and in the end he received a spinal shunt from his neck to his stomach. Logan is missing his C1 C2 vertebrae and will need his head fused when he reaches a teenager.

Logan suffers Drop Attacks and has been diagnosed with Brain Delay. He will need shunt surgeries for the rest of his life and continues to have on-going Chiari related pain.  Logan truely is our strongest Chiari Hero.

 

 

Renfrew 2014 Chiari Awareness Walk

On Saturday Sept 13, 2014, a small but enthusiastic group of walkers braved the rainy weather to walk and raise awareness for Chiari in Renfrew Ontario. In spite of the small numbers, they were able to raise almost $300 for the Canadian Chiari Association. Linda was also successful in getting the local Renfrew paper to publish an article to bring awareness for Chiari and the Canadian Chiari Association. Many thanks to Linda Kavanaugh Thacker and Jackie Recoskie for organizing this inaugural event. 

Ottawa 2014 Chiari Awareness Walk

On Sunday Sept 7, 2014, dozens of walkers joined organizers Julie Meilleur and Jenn Mathewson as well as the mayor of Ottawa for the inaugurial Chiari awareness walk around Britannia Park. They were able to raise over $2,000 for the Canadian Chiari Association. Julie and Jenn were also successful in getting the Ottawa city hall heritage building lit purple for the event. Many thanks to Jenn and Julie for organizing this event.

 

Whitby 2014 Chiari Awareness Walk

On Sunday Sept 7, 2014, organizers Janet Hussey and Cathy Crick held their 3rd annual walk for Chiari awareness at Whitby\'s Heydenshore Park. Janet and Cathy has seen this event grow from only a few walkers the first year to 85 walkers this year. They were joined by Whitby mayor Pat Perkins who helped them raise over $2,200 for the Canadian Chiari Association. Thanks to Janet and Cathy for organizing another successful event.

CCA Now has Charity Status

The Board of Directors are happy to announce that as of April 10th, 2014, the Canadian Chiari Association has been granted charity status by the Canadian Revenue Agency. We are now able to accept donations and give tax receipts for any donation over $15. Our charity registration number for tax purposes is 83611 2433 RR0001

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.

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.