Kevin joined the Board of Directors of the Ontario Rett Syndrome Association (O.R.S.A.) as a board member in 2013. In 2016, he took over as President of the association. He graduated from the University of Windsor with an undergraduate degree in Business Administration and a Master of Business Administration (MBA) in 2007. He is currently a Territory Manager for Marvin. Kevin has 2 girls with his wife Lory. Elle was born in 2007 and was diagnosed with Rett syndrome in 2012. She has a little sister, Paige who both admires and supports her. After Elle was diagnosed, Lory and Kevin launched Ref4Rett to raise awareness and funds for research and since 2012, they have raised over $260,000. He is dedicated to ensuring that children and adults with Rett syndrome are enabled to achieve their full potential and enjoy their highest quality of life within their community.
President Elect – Bryan Higgins
Bryan joined the O.R.S.A. board shortly after his daughter Emily was diagnosed with Rett syndrome in 2016. Emily is now a smart and sassy 6-year old who loves interacting with her grade 1 peers. In 2018 Bryan joined the executive committee as President-Elect. He is also Director of Engineering at Mavencare, a company dedicated to helping the elderly age gracefully at home. Bryan lives in Toronto with wife Julie, daughter Emily and son Oliver.
Treasurer – Joan Li
Joan joined the O.R.S.A. board as Treasurer in 2018.
Secretary – Sherry Lawrence
Sherry, for several years, has been an active member of her community in Paris, Ontario, volunteered on the Accessibility Committee for the County of Brant and is working as a Fitness Instructor. Sherry has been volunteering with the Ontario Rett Syndrome Association for over 20 years. She and her family have coordinated the Run4Rett since 2012. Sherry and David have three adult children and three grandchildren. Olivia is 29 years old and has Rett syndrome. Olivia resides at home and is supported by her parents and her network of excellent staff, who are funded by Paramed Home Care Program and MCSS Passport Program. Olivia lives a very engaged and fulfilling lifestyle.
Cindy was born and raised in a small community in the beautiful Ottawa valley. She is married to her amazing husband Daniel for 7 years. She runs a successful home daycare with children newborn to 5 years old for 20 plus years. This is where she had the pleasure to meet a young family and care for their children: little Zoé was diagnosed with Rett syndrome. She participates in a lot of the functions with O.R.S.A. so therefore joined the board of directors in 2020 to be able to help more and give she time where need be.
Jodi was born and raised in Georgetown, Ontario, and grew up as an only child. She currently works as a Registered Practical Nurse in Long Term Care, and is continuing her education through Centennial College/Ryerson University to become a Registered Nurse. She has been a volunteer in her community for the past ten years with Halton Distress Centre. She committed herself to volunteering for O.R.S.A. once her twin nieces (who are two of the three children of her best friend) were both diagnosed with Rett Syndrome in September 2016. She joined the O.R.S.A Board of Directors in January 2018, and has been the Fundraising Committee Chair since August 2019. She believes in the vision and mission of the Ontario Rett Syndrome Association, and wants to be part of providing our Rett community with the information, research, and supports that are needed.
Jordan was born and raised in small community in Northern Ontario, North Bay. Jordan joined the O.R.S.A. board in 2017. A short while after her daughter, Sofia was diagnosed with Rett Syndrome. After attending a Run4Rett in September 2017, it became a mission of Jordan’s to do something on behalf of her daughter. Jordan has 2 children with her Fiancé, Corey. Sofia 6 and Tomas 4. When Jordan isn’t volunteering for O.R.S.A, you can find her selling houses as a Top Producing Real Estate Sales Professional in Northern Ontario! Jordan looks forward to educating others on Rett Syndrome and communicating through Social Media Platforms on behalf of O.R.S.A.
Steve first joined O.R.S.A. as a volunteer on their marketing committee in 2018 and later joined the board in 2019. He graduated from the University of Western Ontario and completed his Master’s of Education Certification in Amherst, New York. Steve has 3 young girls, his youngest, Scarlett was diagnosed with RETT at the age of 18 months. Today, Steve helps with communications, awareness campaign, and the new Uncorked RETT Wine fundraiser.
Sabrina joined the O.R.S.A. board in 2019 after her daughter, Ella, was diagnosed with Rett syndrome on November 8, 2018. Sabrina’s background includes a Degree in Education specializing in Public Health and is a Certified Research Coordinator. She has worked as a Clinical Researcher for over 19 years at McMaster Children’s Hospital in the Division of Pediatrics, department of Hematology/Oncology. She developed a passion for our organization and is excited to join our team to further our mission and to use her skills for mutual benefit. She is the Chair of our Scientific Committee which involves overseeing our Canadian registry, connecting with our partners, (NHCC, OBI, POND, SPOR and CORD), grant writing, and engaging professionals to join our educational conferences. Sabrina lives in Hamilton with her supportive husband, Ross and her two daughters, Tessa and Ella.
Keri-Ann has been Family Outreach Coordinator since 2017. Mother to the amazing big brother Blair, hardworking-sassy Zoé & wife to the best Daddy Darcy. She resides in the province of Québec, however her closest Rett clinic is situated just over an hour at CHEO. She lives in a small rural community and can mostly be found enjoying the great outdoors with her big furry friend Grant.