☰ MENU
You Can Help Now! Donate. Become a member of the Canadian Chiari Association.

Our Directors

Jenn Mathewson

President

 

Jennifer worked for 3 yrs 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 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.

Jennifer has not yet been able to return to work, due to 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 of the Canadian Chiari Association.

Since being diagnosed, Jennifer 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 and 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 a working relationship with many medical and governmental professionals.

Jennifers 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.

Jennifer can be reached at jennifer.mathewson@chiari.ca

Amber Duthie

Vice-President

Amber graduated from Royal Military College Kingston in 2012, with a Bachelor of Arts in Business Administration and was posted to Petawawa, ON. There, as a Logsitics Officer, Amber has fulfilled many job titles including Administration Officer, Contracts Officer, and Finance Officer. 
 
Amber joined CCA in June 2016, bringing her communication, organization, and leadership skills. Amber was first exposed to Chiari when she met Julie, post surgery, through Thomas. As soon as Amber heard Julie was trying to bring awareness to Chiari, she asked how she could help. A year later, a spot opened up on the Board of Directors for the CCA, and Amber knew that is how she can best support Julie, Chiari, and the community. Amber is excited to bring awareness to Canada about Chiari and how it affects the daily lives of those who are effected by it. 
 
Other than volunteering with the CCA, Amber volunteers with Girl Guides of Canada as a Guider, 2 Canadian Mechanized Brigade Group Pipes and Drums as a Highland Dancer, and a few one time a year events. While not working or volunteering, Amber enjoys spending time outdoors with her husband, George, her dog, Cesar, her cat Julius, and her horse, Sierra. 
 

Amber can be reached at amber.duthie@chiari.ca

Julie Watson

Secretary

Julie graduated in 2008 from Algonquin College and has been continuing her education at Carleton University. She currently works for the Ottawa-Carleton District School Board as an Early-Childhood Educator. Julie has always loved to learn and help others in any way she can.

 

Julie has always known something was not right in her life medically but no doctors could ever solve her mystery. She eventually found a new family physician who was up to the challenge to figure out what was going on. In less than a week of her first appointments, she was diagnosed with Chiari Malformation. She was finally referred to neurologist Dr. Maclean (Ottawa) and then to neurosurgeon Dr. Sinclair (Ottawa). Julie feels very fortunate that she found these two doctors who she calls her guardian angels. Julie was diagnosed with Chiari Malformation, Syringomyelia along with Elhers-Danlos Syndrome. She had decompression surgery February 2013. Following a challenging recovery process Julie returned to work and continues to grow and thrive.

 

Julie’s life was significantly changed with surgery. She gained her independence and her youth back. Julie wanted to make sure others had someplace to turn for help along with advocating for patients in Canada. Julie was an original founding board member and has since returned to her position as our Secretary. As a team with our President, she has also worked closely with the Canadian Organization for Rare Disorders. Together, they have brought great awareness to the rare disorder community.  

 

Julie’s passion is to help others and continue to raise awareness within the community, medical community and with those who have Chiari.

 

Julie can be reached at julie.watson@chiari.ca

Thomas Watson

Treasurer

Thomas Watson comes to us with a background in insurance and risk management. Additionally he has a long history of volunteerism and community engagement. His strong managerial, communication, and project management skills benefit the CCA is many ways.

 

Thomas was first exposed to Chiari when he met his wife, Julie, post surgery. As their relationship developed he was amazed by her confidence and refussal to allow anything, including her medical conditions, from stopping her from returning to work and leading the full and active lifestyle she wanted. It is this determination that sparked Thomas' desire to help bring awareness and support to all who suffer from Chiari.

 

Outside of the CCA Thomas is the Vice-President of Guardsman Insurance Services Inc, an officer in the Canadian Armed Forces, and a member of the board of multiple non-profits and charities.

 

You can reach Thomas at thomas.watson@chiari.ca

 

Celeste Levis

Director

 

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!
 

Celeste can be reached at celeste.levis@chiari.ca

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.