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Our Directors

Jenn Mathewson

(Acting) President


Jenn worked for 3 years in Government travel and was well on her way to becoming management with her global company when her symptoms of Chiari became very strong and impacted her daily quality of life.

Her symptoms were always thought to be connected with being 4 months premature as she showed signs and symptoms from a very early age. Her greatest symptoms were and still are extreme pressure headaches, neck pain, tremors and dizziness. Since they were assessed individually versus collectively, tests performed by various doctors, came back negative. In April 2010, she was finally referred to Dr H Rabinovitch (in Ottawa), after requesting to be so.

In late May 2010, she was diagnosed with Chiari Malformation and in September 2010 diagnosed with Syringohydromyelia. Her decompression surgery was performed by Dr Charles Agbi on November 18th 2010 at the Ottawa Hospital – Civic Campus. 

Jenn has not yet been able to return to work, due to severe symptoms continuing to affect her daily quality of life and a diagnosis of Elhers-Danlos Syndrome in August 2013. She hopes to one day resume her position, as she is working hard through treatments and medication, while serving on the board. 

Since being diagnosed, Jenn has been a strong advocate for Chiari awareness and patients care, both in Canada and globally. She has been active in social media networking, raising awareness, providing educational information and support to patients & their families. She has participated in many conferences with the Canadian Organization for Rare Disorders, leading CCA to become a partner and her to become an Ambassador for them. She has developed working relationships with other Chiari focused organizations in effort to advance knowledge, care and support for her fellow Chiari sufferers. She has developed a working relationship with many medical and governmental professionals. 

Jenns passion is to continue to provide support to those who suffer from Chiari and their families, along with raising awareness within the medical community and public.

Kirsi Sykes

Vice President 


Kirsi is a business strategist, and transformational change management professional with 15 years experience in financial services and international organizations. She is a broad thinker who is able to create a sense of unity and purpose to drive change. She has a proven track record in strategic planning, communications, and executing change in small and large organizations alike. She holds a BA Honours from York University and Masters in Social Science from the University of Helsinki.

After years of progressing, debilitating symptoms, Kirsi was diagnosed with Chiari Malformation 1 and Syringomyelia in 2016. Given the severity of her condition, she was a strong candidate for surgery and decompression later that year. Her years long journey into diagnosis, recovery from surgery, and now daily living with significant symptoms, have driven her to learn about Chiari, Syringomyelia and many comorbidities that they often come with. Kirsi is now a passionate advocate for Chiari awareness, patient care and research. 

Celeste Levis

Director of Events and Marketing


Celeste always loved doing everything her older brothers got involved in. Whether it be karate classes, cross-country, basketball, volleyball, dance or any other sport, she loved being active. At 13 years old the headaches started and she began missing classes and practices. With time came memory loss, dizziness, vomiting, fainting, tingling in her extremities, hallucinations, you name it. After 8 long months of testing, a dozen different specialists and no longer able to regularly attend school, it was the day her legs paralyzed that she was finally air ambulanced to CHEO hospital for emergency surgery. 

 A team of neurologists had finally figured out why her world was turned upside down. Even after surgery, symptoms like the pressure headaches and weakness in her arms and legs continue to plague her, but she remains positive. The specialists told her that the nerves had already been damaged. After decompression surgery, it is very important to never risk falling or getting hit in the head; therefore playing sports was no longer an option. This is when she turned to music.

 Celeste began writing songs after teaching herself the piano and guitar during the long recovery period. Just entering high school, she joined music classes all the while competing in different songwriting competitions across Ontario. It was liberating and empowering finding a way to express herself through lyrics and melodies in ways she never could in conversation. She then competed on “La Voix”, the French-Canadian version of  “The Voice”, making it all the way to the semi-finals. She always had difficulty sharing her complicated Chiari story but with the visibility and following that being on “La Voix” created, she realized that she was not alone. She received hundreds of messages from people across Canada saying that they were Chiari survivors or had just been diagnosed and how good it felt to know that they were not alone. It was amazing the difference that just talking about Chiari had made in the lives of others, not to mention hers.  

Celeste became eager to create or be a part of something positive that could change the lives of those living with the realities of Chiari Malformation. Then she found CCA! 

 She believes that everything happens for a reason and that we are granted these lives because we are strong enough to live them. TOGETHER, we've got this!

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.