In 2018, the Sibling Youth Advisory Council (SibYAC) was established and have continued to partner to conduct the BEST SIBS Study. The SibYAC is comprised of six young adult siblings (ages 21 to 28 years old) with 1 brother and 5 sisters who have a sibling with a disability in Canada.
The SibYAC is facilitated by Linda Nguyen (PhD Candidate in the School of Rehabilitation Science at McMaster University) under the supervision of Dr. Jan Willem Gorter.
Biographies of some of our SibYAC members
Dana Arafeh completed her graduate studies in Health Informatics. She is 28 years old and was born with a rare disease called Limb Girdle Muscular Dystrophy Type 2 E. Her journey as a patient navigating the healthcare system has made her really passionate about patient engagement and what led her to her current career path as a current patient engagement specialist with the Department of Family Medicine at the University of Toronto. She has three other siblings (ages 24, 22, and 20), and her brother who is 24 years old is affected with the same chronic condition as her. In her spare time, she participates in a lot of adaptive sports such as adaptive skiing, sailing and climbing. She also loves to paint. She is excited to share her experiences as a sibling with the Sibling Youth Advisory Council and hear about others’ experiences.
Samantha Bellefeuille is an older sister to her brother who is 18 years old and has CDKL5. She is the Director and Founder of a day program for adults with disabilities called Fostering Forever Friendships, in Ottawa, Ontario, Canada. Linda and Samantha met when they were completing the Family Engagement in Research Certificate Program at McMaster University. When Linda asked if Samantha would be a part of the Sibling Youth Advisory Council (SibYAC), Samantha immediately said yes. Samantha believes that many siblings need a platform to be able to be a part of all aspects of their siblings’ life especially when transitioning from paediatrics to adult care. Samantha looks forward to seeing where the research projects with the SibYAC goes!
Hanae Davis has been a member the SibYAC since 2019. She has a younger sibling with cerebral palsy, and loves using her lived experience to contribute to research and community outreach initiatives and connecting with other siblings. She is currently a Planning Associate in the Cancer Experience Program at the Princess Margaret Cancer Centre (Toronto, Ontario, Canada). She completed her BSc in Psychology, Neuroscience & Behaviour in 2015, and her PhD in Cognitive Psychology in 2020 at McMaster University. Her doctoral thesis examined the relation between attention and memory processes in desirable difficulty effects - when difficulties during initial learning benefit subsequent memory retention. During her postdoctoral fellowship at CanChild, she worked with Dr. Jan Willem Gorter and her research focus was on cognitive functioning in youth with cerebral palsy, to better understand how cognitive control impacts learning and emotion regulation in this population.
James Koutrakos joined the SibYAC in late 2019. He joins as an older sibling to a brother who is on the autism spectrum. James has an educational background in Business Technology Management, UX, and Web Development, and is currently working as a UX Designer and Researcher at the Ontario Teachers’ Pension Plan. Outside of the SibYAC and work, James and his family run a charitable organization called the Elpida Autism Foundation, where he owns social media and technology for the organization.