Agenda

9:30-10:00 Annual General Meeting

10:00-10:15- Scholarship Awards, Donor and Volunteer Recognition

10:15-10:45- Presentation #1: Carving the Rules: A Rational Design of Anti-Occlusion Self-Cleaning Ventricular Catheters

By: Haritosh Patel, Harvard University and Amy Huang, University of Toronto

10:45-11:00- Break

11:00-11:25- The Power of Self-Compassion in navigating a lifelong journey with spina bifida

By: Ana-Maria Oproescu, Adult living with Spina Bifida

11:25-12:00- Exploring the experiences of ableism among Asian children and youth with disabilities and their families: A systematic review of qualitative studies

By: Yiyan Li, Pd.D

12:00-12:25- Lived Experience- Parenting a Child with Hydrocpehalus

By: Ashley McKellar, Mom and Advocate

Presentation #1: Carving the Rules: A Rational Design of Anti-Occlusion Self-Cleaning Ventricular Catheters

Amy is currently a 4th year undergraduate biomedical engineering student at the University of Toronto, and she is extremely passionate about the development and optimization of biomedical devices. In the Aizenberg lab, she is working with Haritosh to develop fluid-guiding, anti-fouling, self-cleaning catheters to eliminate catheter-related complications. Amy is also an active volunteer with HC, and she has been working on a variety of outreach initiatives to help HC expand across Canada. 

Haritosh is a 4th year bioengineering PhD candidate at the School of Engineering and Applied Sciences, Harvard University. His research focuses on innovative biomedical solutions through the convergence of material science and bioengineering. In the Aizenberg lab, he is actively leading projects surrounding rational design of implantable medical conduits, paper-based diagnostic devices for assessing infection risk, and machine learning guided sensors for odor diagnostics. Embracing an interdisciplinary approach, he champions the principles of translational science with technology that enhances healthcare outcomes which benefits both patients and providers, with an emphasis on promoting equality, accessibility, and transparency in healthcare.

Presentation #2: Lived Experience- Parenting a Child with Hydrocephalus

My name is Ashley McKellar and I am living in Ottawa with my husband Ryan, our son Isaac, and our dog Luki. I am looking forward to talking at the annual general meeting this September about my journey as a first time mom to our son who has hydrocephalus. My story about becoming a mom starts in 2019 – but at the time of my delivery in April 2020 we were facing so many unknowns with Covid-19, lockdowns and a new unexpected diagnosis of congenital hydrocephalus. Please join me as I share my story, in hopes that as a new parent going through this diagnosis you won’t feel so alone, and to encourage you to never stop advocating for you and your child. 

Presentation #3: The Power of Self-Compassion in navigating a lifelong journey with spina bifida

With a strong vision for increasing awareness and leading change, Ana-Maria will be helping HC to promote the voices and experiences of youth living with spina bifida and hydrocephalus as our newest Youth Ambassador.  Ana-Maria will deliver fact-based advocacy and engage partners in developing new ways of facilitating accessibility, making it easier for these youth to thrive in our communities and workplaces. 

Presentation #4: Exploring the Experiences of Ableism among Asian CHildren and Youth with Disabilities and their Families: A Systematic Review of Qualitative Studies

Yiyan Li, Ph.D. Yiyan is a postdoc fellow at the Trail Lab, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital. Her research interests lie primarily in children and youth, disability studies, social determinants of health and substance use. Currently, she’s focusing on exploring lived experiences of youth with disabilities from ethnically diverse groups.

(This presentation was not recorded, as requested by the presenter)

Review: Minutes from 2022 Annual General Meeting

As a quick review, the minutes from last year’s 2022 Annual General Meeting can be found here

Review: 2022-2023 Financial Statements

Our financial statements from the 2022-2023 fiscal year can be found here