top of page



Founder & CEO

Jenni is the founder and CEO, with over 25 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

  • LinkedIn

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. Peggy is integral in supporting Canadians with CdLS in accessing referrals and providing clinical guidance to clinicians across the country.


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 of Business from the University of Western Ontario.  David is both a Chartered Professional Accountant and a Certified Management Consultant.


John Ruetz.jpg
Board Secretary

John is the Secretary of the Board of Directors. John brings decades of healthcare leadership and governance experience and is currently the President & CEO at Catholic Health Alliance of Canada. Most recently John completed the Chartered Director (C.Dir.) program in Governance from the DeGroote School of Business in Burlington, ON. John resides with his family in PEI.

Dr. Vanda McNiven

Clinical Geneticist & Genomics

(McMaster Children's Hospital, Hamilton, ON.)

Dr. Vanda McNiven is a Clinical Geneticist at McMaster Children's Hospital and an assistant professor in the Department of Pediatrics at McMaster University. She completed her medical school and residency training in Medical Genetics and Genomics at the University of Toronto. Dr McNiven has a special interest in CdLS and in supporting raising awareness, early diagnosis, and facilitating the care of individuals with CdLS.

Photo Sam AI.jpg

Samantha Gourmos

Communications & Engagement Specialist

Samantha, dedicates herself to raising awareness and impacting lives affected by CdLS. With a background in Early Childhood Education and over 9 years of experience working with special needs children, she advocates for inclusion and amplifies voices through a variety of communication platforms and social media. Samantha is driven by empathy and collaboration, eager to support CdLS communities in Canada for a brighter future.


Sarah Oke

Family Coordinator

Sarah is passionate about supporting families and especially parents of children with special needs.  From organizing parent meet-ups to our Welcome" home visits, Sarah finds ways to connect others in an empathetic and understanding approach.  She is also the mother of a young child with CdLS.

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.


Clinical Advisor
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

Dr. Michael Wan.png

Clinical Advisor

Speech-Language Pathologist

Sarah is a Toronto-based speech-language pathologist with 17 years of experience. She received her Masters of Health Science in Speech-Language Pathology from the university of Toronto. She has been privileged to work with a number of CdLS families over her career and is excited to contribute to the foundation as a Clinical Advisor. Sarah's clinical interests include motor speech disorders, augmentative and alternative communication, cleft palate and veto-pharyngeal insufficiency. Sarah currently balances her work between the Holland Bloorview Kids Rehabilitation Hospital and her private practice, Upper Beach Speech.

Jenn Evans Profile Photo.jpeg

Jenn Evans BSc. MSc.

Clinical Advisor

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 Director of TheraBounce Inc. in Ontario, where her and her team provide Rebound Therapeutic Trampolining for children and adults with various exceptionalities.  Jenn also works in a paediatric physiotherapy clinic where she provides specialized care to complex paediatric patients. Through her clinical experiences, Jenn has developed a special interest in individuals with CdLS and is dedicated to supporting Canadians with CdLS and their fullest movement potential. 

bottom of page