Education, Support & ​​​Resources for RARE Disease Management!

Charity #: 802775791RR0001

syringomyelia, Chiari  Malformation & Rare Diseases

Victor Hyman

Board Member

(Special Events)
Brampton, On Canada

Carion Fenn, Founder (Ajax, ON Canada)

Carion Fenn is an award winning advocate receiving the Spinal Cord Injury Ontario (SCI-ON) & University Health Network (UHN) Patti Dawson Award, Ajax Civic Award from Town of Ajax (the Town's highest honour), Advocacy Award from Abilities Awards and the Accessibility Community Award from the Town of Ajax. She's currently serving her 2nd term on the Town of Ajax Accessibility Advisory Committee and a Member of the Rotary Club of Pickering. 

Kianna Haughton

Board Secretary
Ajax, On Canada

Melike

Board Member

​Advocacy
Brooklyn On

Canada

Ken Anderson

Board Member 
North Vancouver BC Canada

Since my early teens, I have been passionate about working with non-profit organizations in various fields. My father introduced me to fund raising for an ethnic non-profit at an early age and I helped him register a new non-profit youth association. Through my University career at University of Alberta and York University, I continued to volunteer in various on and off campus associations.
After I completed my Masters degree in Psychology, I joined IBM as a Diversity Officer specializing in educating girls about Science, Math and Technology while also working with Wellsizing the Workplace for employees with disabilities. My career progressed in various Sales roles within IBM, SAP and currently as a Sales Executive at Hewlett Packard Enterprise. As part of my various career roles, I have consistently stayed active in initiatives like Women in Technology.
My extracurricular focus changed in recent years when my 4 year old son, Aydin, was diagnosed with Intractable Epilepsy. My life as I knew it was altered. Between the Emergency visits, hospital stays, multiple medications, and severe side effects, I was lost not knowing who to turn to for support or information. I stumbled upon Epilepsy Durham (EDR) who provided the support and guidance I needed as well as connection to other families. I became very active with EDR, volunteering, fund raising and engaging my children as EDR Ambassadors. It is at an event where we were representing EDR that I met Carion Fenn. The passion at Carion Fenn Foundation for progressive advocacy for those that do not necessarily have the voice to demand action matches mine. I look forward to working with the organization as Carion Fenn expands into a greater role within the community and government.

Board Members

Kianna Haughton is a college student training to be a Dental Assistant. She enjoys dabbling in Cosmetic Art (Make Up) on both herself and willing friend test subjects. Kianna is an avid Nicholas Sparks reader as well as sharing a hobby with her sister in miniature house model building. For the Carion Fenn Foundation, Kianna volunteers her time as  a Board Member, Secretary as well as Youth Ambassador. In addition  to  that,    it’s    not    difficult    to    identify Kianna looking through  our materials, as she is also the Foundation  Model for  all  of our non-profit  Syringomyelia  &  Chiari  awareness  products.  Kianna  is  active in the organization,  attendance  and  reporting  of  all  of our events,  and has been for two years.

Ken Anderson was born, raised and lives in North Vancouver, British Columbia, and much of that time has been spent living with disability. Ken survived a spinal cord injury occurring as a result of a motor vehicle accident when he was just a teenager. Ken having suffered a devastating life setback chose to value the gift of life and drive forward productively and energetically. Ken participated in rehabilitation at the G.F. Strong Rehabilitation Centre. Ken has also continued to pursue athletics,  participating in an array of wheelchair athletic venues. Most notably Ken was part of the Sports Hall of Fame inducted Vancouver Cable Cars Wheelchair basketball team. Ken has also worked for the British Columbia Paraplegic Association. After High School Ken attended the British Columbia Institute of Technology BCIT as well as Kwantlen Polytechnic University. Having been a person living with disability since his teenage years, Ken has seen the need for advocacy in support of the rights and freedoms of the disabled, and has for much of his life, both worked and volunteered in support of his peers. Ken has now taken on the challenge of awareness, advocacy and support of those living with Syringomyelia and Chiari Malformation. 

Victor is a caring, dedicated advocate and passionate advocate helping to support others. He has been by Carion's side helping communities since 2008. He's apart of the event team and work in the Contruction Industry. Hard working and dedicate to helping to make a difference for others. 


​​Communications: Editing, Newsletter, flyers, brochures, setting up interview, liason with media etc... 

The Carion Fenn Foundation Board of Directors is responsible for the overall direction of the organization. 

Alex Blair

Board Member
Ajax On Canada

Board Member

Treasurer 
Finances: Accounting, Bookkeeping. 

Grant Writer

Carion is recognized for her innovative approach to design, giving interior spaces that 'designers touch', and her Community Service work. She's also known across Canada as an Inclusiveness & Accessibility Advocate. 


Carion Fenn is the Founder of the Carion Fenn Foundation & the Carion Fenn Network. She is also the architect behind Rare Disease Support Group Meetings in partnership with Ajax Public Library and the First Annual Rare Disease Expo supported by the Town of Ajax, Impact Fund. City of Pickering Mayor Dave Ryan presented the Carion Fenn Award for Bravery & Courage at the First Annual Rare Disease Expo. Educating the public, providing support and helping find solutions for so many who otherwise would be suffering in silence with nowhere to turn for help and support. 

Diane Bateman

Board Member (Communications)
Oshawa, On Canada