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Patient Survey

We are pleased to partner with ILC to continually advocate for better care for chronic pain, Ehlers-Danlos Syndrome and other associated conditions such as Chiari and Syringomyelia. We are pleased to offer this opportunity to make your voice heard by participating in the ILC survey below. Please see their remarks as well.

Thank you in advance for your contribution!

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Please take this survey titled "Understanding healthcare barriers for patients with Ehlers-Danlos Syndrome, hereditary connective tissue disorders, and complex chronic pain in Canada" Your feedback is important!

 

The ILC has been advocating for its cause for more than eight years, yet we continue to see gaps in care. As a result we put together a survey, giving voice and quantifiable data to the neurological and neurosurgical needs in the connective tissue disorder patient population.

 

We can not stress enough the importance of you taking the time to fill this out. It is critical that we have benchmark data to use in our advocacy efforts both provincially and federally. Help the ILC help you!

 

Should you need assistance in filling out the survey, please send a response to this email and you will be connected with someone that can help.

 

Thank you 

 

Sandy Smeenk

Executive Director

 

Click here to access the ILC survey 

 

Call for volunteer Board Members/ Appel de Membres Benevoles du Conseil

As Chiari Awareness month has come to an end, we wanted to take the time to thank every single one of you for your ongoing support. We see so many amazing ideas and so much passion put into all the different messages and comments we receive, and let us assure you we are working as a team to offer you the best support we can.

As a volunteer based association, we are always looking for help, because we all know how Chiari can affect us day to day. Whether you are interested in helping out with a “information session” in your community, hosting an awareness walk, donating your time and creativity or even taking on a director position (we have several open), please contact us!

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Nous voulons prendre le temps de vous remercier pour tout votre engagement envers notre association. C'est facile de voir la passion dans vos idées et vos commentaires. On travaille fort en équipe pour assurer de vous offrir le meilleur appui possible.

Puisque nous sommes une association à base volontaire, nous sommes toujours à la recherche de gens qui pourraient nous aider dans la planification d'évènements, en partageant leurs expertises ou même en devenant un membre officiel de notre conseil d'administration (nous avons plusieurs). Si vous êtes intéressé, svp communiquez avec nous!

Continuing Medical Education Program Event

CCA has been presenting an amazing Continuing Medical Education Program event from one of our recent partners to medical professionals across the country! We are doing over very best to reach as many as we can who are involved in the care of Chiari, Syringomyelia and EDS patients. We invite you to present this information brochure to your care specialist(s). This may include a general practioner, pain specialist, physiotherapist, rehab centre, radiologist, etc. We invite you to share with us through our Contact Form who you have provided it to so that we may expand our networking system. Please note this event is for medical professionals only. A future announcement for a patient opportunity will come.  

Click here to view and print the brochure  

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.

 

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.