The Pompe Empowerment Workshop: Toronto was held at the Weston Toronto Airport on Saturday, September 28, 2024. Sessions included an array of topics shown in the agenda below. Participants also had the opportunity to share their experiences in a facilitated, private setting.
This was a regional event. We were pleased to welcome patients and caregivers from Ontario and the Maritimes.
Agenda
|
Time |
Topic | Speaker |
|
8:00am |
Breakfast and registration | |
|
8:50am |
Welcome | Brad Crittenden Executive Director, CAP |
|
9:00am |
National Strategy for Drugs for Rare Diseases | Dr. Gail Ouellette Geneticist and Genetic Counsellor |
|
9:15am |
Canadian Rare Disease Network | Ian Stedman Associate Professor in the School of Public Policy and Administration at York University |
|
9:40am |
Genetics Workshop | Dr. Gail Ouellette Geneticist and Genetic Counsellor |
|
10:40am |
Break | |
|
11:00am |
Coping with Change | Sam Wu Caregiver, On-call Chaplain, & Counsellor |
|
12:00pm |
Lunch | |
|
1:00pm |
Pompe Disease and Canadian contributions to R&D | Dr. Josh Nederveen Professor, McMaster University, Faculty of Science – and – Alessandra Chiarot MSc. student candidate in the Kinesiology department at McMaster University |
|
1:30pm |
Emerging Therapies and the Impact of Exercise and Nutrition | |
|
2:00pm |
Fostering Community: Connecting and Learning Together | Nathalie Ménard Director, Ménard Coaching & Consulting |
|
3:00pm |
Break | |
|
3:20pm |
Roundtable Exercise | Group |
|
4:20pm |
Wrap-up | Brad Crittenden Executive Director, CAP |
Speakers
Alessandra Chiarot
MSc. student candidate in the Kinesiology department at McMaster University
Brad Crittenden
Executive Director, Canadian Association of Pompe #Pies4Pompe
Nathalie Ménard
Director, Ménard Coaching & Consulting
Dr. Josh Nederveen
Professor, McMaster University, Faculty of Science
Dr. Gail Ouellette
Geneticist and Genetic Counsellor
Ian Stedman
Associate Professor in the School of Public Policy and Administration at York University
Sam Wu
Caregiver, On-call Chaplain, & Counsellor
Sponsors
We want to express our gratitude to Sanofi, Amicus Therapeutics and Astellas for their support.
