with Hydrocephalus and/or Spina Bifida


Thank you to everyone who attended our AGM and Conference this year! If you were not able to attend, you can watch the videos on our YouTube channel (click on the video you would like to watch):


List of Presentations & Presenters

Dr. Sally Lindsay & Hiba Ahmed: Disability Disclosure Toolkit for  Youth Seeking Employment

Dr. Sally Lindsay is a Senior Scientist at Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital and an Associate Professor in the Departments of Occupational Science and Occupational Therapy, University of Toronto. Her PhD is in the Sociology of Work and Health. Her research focuses on the social inclusion and participation of children and youth with disabilities, especially as they transition to adulthood and into the workplace. She has 140 publications, 150 invited presentations and has been awarded 20 peer-reviewed grants totalling over $6.5 million as a principal investigator from SSHRC, CIHR among others. She currently holds an Early Researcher Award from the Ontario Ministry of Research and Innovation for her work on “Improving the inclusion and participation of people with disabilities in the labour force”. She was recently elected into the College of New Scholars, Artists and Scientists of the Royal Society of Canada.


Dr. Alfonso Fasano: NPH-The Neurologist’s View

Dr. Alfonso Fasano holds the Chair in Neuromodulation and Multi-Disciplinary Care at the University of Toronto and University Health Network. He is a Professor in the Department of Medicine (Division of Neurology) at the University of Toronto. He is staff neurologist and co-director of the Surgical Program for Movement Disorders at Toronto Western Hospital. He is also staff neurologist at the Hospital for Sick Children. Dr. Fasano is a Clinician Investigator at the Krembil Research Institute and KITE – Toronto Rehabilitation Hospital. Dr. Fasano leads the Core E (closed-loop capabilities) of the CenteR for Advancing Neurotechnological Innovation to Application (CRANIA) and sits in the scientific advisory board of the Dystonia Medical Research Foundation and International Essential Tremor Foundation. He’s the chair of the Normal Pressure Hydrocephalus study group and member of the study group on tremor of the International Parkinson Movement Disorders Society; he’s also member of the Tremor Research Group and the Parkinson Study Group. Dr. Fasano also recently joined Hydrocephalus Canada’s Medical Advisory Board.

Dr. Fasano received his medical degree from the Catholic University of Rome, Italy, in 2002 and became a neurologist in 2007. After a 2-year fellowship at the University of Kiel, Germany, he completed a PhD in neuroscience at the Catholic University of Rome. His main areas of interest are the treatment of movement disorders with advanced technology (infusion pumps and neuromodulation), pathophysiology, and treatment of tremor and gait disorders. He has authored over 300 scientific papers and book chapters. Dr. Fasano is the co-editor of the section “Gaps and Controversies” of Movement Disorders Journal and editorial board member of Annals of Neurology, Movement Disorders Journal, Movement Disorders Clinical Practice and Parkinsonism and Related Disorders. He is also the principal investigator of several clinical trials.

Tara Geraghty-Ellis: 10 Ways to Advocate for Your Needs in the Age of Covid

Tara is a Disability Empowerment Strategist and thought reformer. She helps people with disabilities transform their life by teaching them out of the box strategies and providing programs to help them meet their goals. She is the author of VisAble and Empowered, and creator of the VisAble and Empowered 10-Week Coaching Program available on her website. She has successfully overcome her childhood disability struggles, and dealt with the impacts of mental illness and adult onset Chiari Malformation. Tara has a fierce strength and determination to live the brilliant abundant life she was called to live. Over the past 20 years Tara has assisted hundreds of children, teens, adults, seniors and families overcome challenges and get the help they need to make their lives better than they ever thought possible.



Leslie Parks: Overview of the Codman Specialty Surgical Valve Portfolio

Leslie Parkes is the Head of Marketing for Integra Canada and has led this division since 2015.  Leslie began her career in New Zealand in medical affairs, followed by a transition to sales and finally marketing with a move back to Canada 7 years ago.  In marketing Leslie found her passion for helping patients by supporting medical professionals with innovative technology and working with clinical thought leaders supporting new best practices for improved patient treatment in the neurosurgical space. 

Integra LifeSciences is a leading global medical technology company dedicated to limiting uncertainty for clinicians, so they can concentrate on providing the best patient care.  In 2017, Integra LifeSciences completed the acquisition of Codman Neurosurgery from Johnson and Johnson, making the newly branded Codman Specialty Surgical division of Integra LifeSciences one of the largest and most relevant neurosurgical focused companies in the world.  Codman Specialty Surgical’ s investment in product innovation allows us to provide more healthcare solutions to surgeons and their patients worldwide.  A focus of Codman Specialty Surgical is in the hydrocephalus space where we develop new innovation, focus on research, and also partner directly with neurosurgeons and neurologists to support important medical education initiatives.


Dr. Anne Berndl and Asia vanBuuren: Reproductive Health, Sexual Health, and Pregancy Experiences of Women with Spina Bifida: A Qualitative Study

Dr. Anne Berndl is a maternal-fetal-medicine specialist at Sunnybrook Hospital, and the founder and director of the Accessible Care Pregnancy Clinic. She is an assistant professor at the University of Toronto and an Associate Scientist at the Sunnybrook Research Institute.

She is the Chair of the Spina Bifida Association women’s health guidelines, and involved in multiple research projects in the field of pregnancy and physical disability.


Asia Van Buuren is a senior medical student at the University of Toronto. She is a research assistant at Sunnybrook Health Sciences Centre, and has worked with Dr. Berndl doing research on the reproductive health needs of women with spina bifida. She has a community development background and is passionate about disability justice.




Gabriella Carafa, social worker – Parenting With a Disability; Psychosocial Considerations.

Gabriella is a social worker who is certified in perinatal mental health. She has over seven years combined experience working with individuals with disabilities and complex medical conditions as well as supporting individuals in the perinatal period. She works with children, adolescents, adults, families and couples in her private practice.  She has a special interest in parenthood for folks with disabilities including physical, intellectual, learning and/or episodic disabilities and has her own lived experience of disability.  Gabriella is passionate about sharing knowledge and experience by providing content interviews, professional workshops, creating invited blog content, and leading healthcare and social services training opportunities. Gabriella brings a diverse, unique, passionate and vibrant voice to the realities and intersections of mental health, ability & the perinatal experience.


Ed Arbuckle: Disability Tax Credit Planning for Seniors and Families

Ed Arbuckle is the owner of Personal Wealth Strategies in Waterloo, Ontario where his office does personal financial advisory work for clients in his area and across the country. His practice concentrates primarily on personal tax planning, Canadian and US income tax preparation and assisting families with their tax and financial issues with respect to disability of a family member. In his community involvement, Ed has served on many not-for-profit and government Boards involving health care.

Recently, Ed authored The Family Guide to Disability and Personal Finances which was published by Tellwell publishers in Victoria, BC. and is available from Ed or on Amazon. He also writes regularly on Linkedin and issues frequent newsletters about disability to his clients, friends and followers.

Ed was formerly a tax partner with a national accounting firm and was awarded the designation of Fellow of the Institute of Charter Accountants because of his significant contribution to the profession and his extensive community involvement.


Our conference and AGM was generously sponsored by: