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Founder & CEO

Jenni is the founder and CEO, with over 20 years of healthcare experience in the clinical, education, leadership and governance roles in acute care, public health and education sectors. She is also the mother of a child with CdLS. Through this experience she has realized the challenges of those with rare diseases in Canada in terms of access to healthcare and education and the demands placed on those who care, educate and support individuals with CdLS. She can be reached at

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Dr. Margaret (Peggy) Marcon MD. FRCPC

Medical Director

Dr. Marcon is a staff Gastroenterologist at the Hospital for Sick Kids in Toronto and an Associate Professor of Paediatrics at the University of Toronto.  Dr. Marcon has been involved with patients with CdLS for many years and has a special interest in children with CdLS.  Her clinical and research interests are in swallowing disorders and gastrointestinal motility.


David Graham CPA. CMA.


David is the President & CEO of Scarborough Health System in Toronto, Ontario.

 He is the Treasurer and member of the Board of Directors for the Canadian CdLS Foundation and brings many years of executive leadership experience in areas of education (colleges as universities), healthcare and finance.  David has an MBA in finance from the University of Windsor, and Executive MBA from the Ivey School School of Business from University of Western Ontario.  David is both a Chartered Professional Accountant and a Certified Management Consultant.



Sarah Oke

Family Coordinator

Sarah is passionate about supporting families and especially parents of children with special needs.  From organizing parent meet-ups to house calls, Sarah finds ways to connect others in her empathetic and understanding way.  She is also the mother of a young child with CdLS.


Kim Fenton

Provincial Family Coordinator- British Columbia

Kim is the mother of an adult child with CdLS and has several years of experience navigating the BC health system, community services, high-school, independent living, and speech and language services.

Family Coordinator

Ariel is passionate about supporting and connecting new families recognizing how overwhelming and alone parents can feel. She has completed the social services program and is the Developmental Services Intake Coordinator at Walpole Island First Nation..  Ariel is a mother of three with their middle child, Mila having been born with CdLS.Ariel and family reside in Wallaceburg, Ontario.


Dr. Laurie Ireland MD & Davey Ireland

Provincial Family Coordinators - Manitoba

Laurie and Davey provide support to families impacted by CdLS in Manitoba.  They have two children and their youngest son was born with CdLS.  They reside in Winnipeg, Manitoba.

Paediatric Ophthalmologist (Sick Kids Hospital, Toronto)

He completed ophthalmology residency training at the University of Toronto and a fellowship in paediatric ophthalmology and strabismus at Boston Children’s Hospital and Harvard Medical School. His primary research interests are in paediatric neuro-ophthalmology and strabismus. Michael supports several children with CdLS in Ontario. Michael is available at 1-416-813-6525


Clinical Advisor

Speech-Language Pathologist

Sarah has worked as a speech-language pathologist for over 10 years. She has been privileged to work with several CdLS families over her career and is excited to join the foundation as a Rehab Professional. She is trained in the PROMPT approach to treating disorders of motor speech and the Hanen approach to working with parents and teachers to set and achieve goals in language and literacy. Sarah currently balances her work between the Toronto school board and her private practice.


Jenn Evans BSc. MSc.

Clinical Advisor
Physiotherapist in Residence

Jenn is a passionate and energetic practitioner with a special interest in the most complex paediatric patients. Jenn graduated from Leeds University in the UK with a MSc. in physiotherapy and is a Registered Physiotherapist (PT) in Ontario.  She brings a whole person approach to her care that is fun and engaging.  Jenn is currently the founder and operator of TheraBounce in Ontario, where her and her team provide Rebound Therapy and Flexi-Bounce Therapy to children and adults with various exceptionalities.  Jenn also works in an Ontario paediatric physiotherapy clinic where she provides specialized care to complex paediatric patients. Through her Rebound Therapy she has developed a special interested in individuals with CdLS and is dedicated to supporting Canadians with CdLS and their fullest movement potential. 

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