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Fundraising Walk in Granby QC

This past weekend a dedicated group of volunteers held a successful walk in Granby QC. The weather was perfect and everyone had a great time while raising awareness of Chiari Malformation.

 

A total of $2,500 was raised to go towards Chiari awareness. 

For a news article (French) about the day click here.

To join the conversation click here.

 

Successful School Fundraiser!

The Canadian Chiari Association is proud to announce the completion of a successful fundraiser!

A few weeks ago, Mason Donkin, who is diagnosed with Chiari Malformation, and his mother Jennifer Donkin held a fundraiser at Masons school.

It is absolutely amazing how much support they got from fellow students.

They raised a total of 3000$!

Mason and his mom are also hosting the Bradford, ON Chiari Awareness Walk on july 15th. (Facebook Event:  https://www.facebook.com/events/135780143632901/)

Once again, a huge thank you to the Donkin family for your courage, passion and all of your hard work. Can't wait to finally meet you all on July 15th!

Call for Nominations - Board Position

As Amber Duthie is now the Vice President, the CCA is putting out a Call for Nominations for our Volunteer Coordinator Position. You can see the position details below. Please submit your resumé via email (contact@chiari.ca) by 5pm 12 April 17.

Volunteer_Coordinator_-_English.pdf

 

Maintenant que Amber Duthie est Vice-Présidente, l'ACC recherche des nominations pour la position de Coordonateur de Bénévoles. Vous pouvez voir les details de la position ci-dessous. SVP soumettez votre CV par courriel (contact@chiari.ca) avant 1700 heures 12 Avril 17. 

Volunteer_Coordinator_-_French.pdf

Amber Duthie Appointed Vice-President

CCA is pleased to announce that Amber Duthie has successfully been appointed Vice President. She has demonstrated her hard work and dedication to the Chiari community! She will move into this role effective immediately. Amber brings a wealth of knowledge and experience to this position. We congratulate her and wish her all the best in her new role!

 

L’ACC est heureuse d’annoncer que Amber Duthie a été nommée Vice-Présidente. Elle a démontré son ardeur au travail et son dévouement envers la communauté de Chiari. Elle prend la fonction de Vice-Présidente immédiatement. Amber apporte un bagage de connaissances et d’expérience avec elle dans cette position. L’ACC la félicite et lui souhait du succès dans son nouveau rôle.

Good-bye February, Hello March! (Aurevoir Février, Bonjour Mars)

Good-Bye February:

The CCA has been very active in putting our plans into action for the year!

On February 6, 2017 the CCA approved a forum layout that will be sent to developers in order to get it up on our website.

During that meeting, the final draft of the Business Plan was also approved. The signed plan can be found at  http://www.chiari.ca/about-us/2017-business-plan/

Aurevoir Février:

L’Association de Chiari Canadienne (ACC)  a été très occupée à actionner nos plans pour la nouvelle année!

Le 6 Février, 2017 l’ACC a approuvé un forum internet qui sera envoyer à des créateurs de site web pour être ajouter à notre site internet.

Durant la réunion, le Plan d’Affaires a aussi été approuvée. Le plan signé peut être trouver à l’adresse suivant  http://www.chiari.ca/about-us/2017-business-plan/

Expanding Clinics For Ontarians with Rare Diseases

In time for Rare Disease Day 2017 the Ontario Government anncouned the expansion of clinics for pople living with rare diseases.

 

Full text of the release is included here.

Rare Disease Day 2017

Feb 28 is Rare Disease Day. This day takes place on the last day of February each year. 

The main objective is to raise awareness amongst the general public and policy-makers about rare diseases and their impact on patients' lives.

The Canadian Chiari Association is proud to support Rare Disease Day and salutes all those who help raise awareness about all rare diseases.

 

September Awareness Month

October is now here. While September Awanress Month has passed us by for another year, the CCA is committed to raising awareness for ALL months of the year!

In our dedication to improving the lives of Chiari patients, we are currently working on the following:

 

1. Long term project of working with schools & school boards directly and through public health, to assist students of all ages succeed in their academics.

2. Continuing to work with the medical community to assist patients in accessing proper care.

3. Restructuring the membership platform to better service our members. We are looking at reopening memberships in 2017. 

4. Developing new awareness and fundraising programs to broaden our audience.

 

Together we can make a difference and help everyone who lives with Chiari every day!

Chiari Awareness Day in Ottawa

September 24th, 2016 was Chiari Awareness Day in the City of Ottawa. It was also our 3rd annual awareness walk. Thank you to everyone who came out and raised funds to assist the CCA.

Logan's Latest Chiari Journey

As many of you know we have been following Logan's chiari journey for some time. Here is an update on his latest struggles.

On June 6th, 2016, the doctors in London Ontario attempted to perform Logan's third decompression surgery. However the surgery had to be aborted after accidently nicking Logan's blood vessels that were blocking the path for decompression. At that time, they put his VP lumbar shunt back in as it had come out. Logan's con...dition got worse and his neurosurgeon was going away for two weeks so they sent him immediately to Toronto Sick Kids where they had gotten opinions on his case. Toronto Sick Kids decided to give Logan another shunt after diagnosing him with hydrocephalus due to very high ICP numbers. He received a new shunt and it drained much of the excess fluid from his brain. After one week in Toronto, Logan was released and sent home last Wednesday to recover and wait to see if the new shunt will make a difference in his symptoms. Another decompression awaits him in Toronto in the near future to relieve the brain compression further.

As a result, the CCA is pleased to announce that they have approved funding for Logan and his mother from the CCA's financial assistance program. This program was set up in 2015 to help people like Logan, cope with expenses during financially difficult times. This money will be used to help cover the costs of housing, meals, and transportation while he is being treated at Toronto Sick Kids hospital. We are happy to be able to help.

We will continue to follow his journey and pray for a speedy recovery for our superhero Logan.

 

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.