2024 Workshop: Thriving with Gaucher: Empowerment and Daily Living
A transformative event dedicated to young adults and teenagers managing Gaucher disease.
Educational Objectives:
Understanding Gaucher Disease
Self-Advocacy and Healthcare Navigation
Mental and Emotional Wellbeing
Lifestyle Management
Educational and Career Development
Community and Social Engagement
Personal Empowerment
By attending this workshop, young adults, and teenagers with Gaucher disease will gain valuable insights and practical tools to enhance their quality of life and actively participate in their health journey.
AGENDA
• 8:30 AM: Breakfast
• 9:00 AM: Welcome and Ice-Breaking Session – Leah Svarny, PA
• 9:30 AM: Keynote Speech: Living with Gaucher Disease - Personal Stories – Izzy Mcfalls
Empowerment and Advocacy
• 10:00 AM: Workshop: Navigating Healthcare - Being Your Own Advocate – Madelyn Schloss
10:15 AM - Mindfulness for Stress Management; Parents/care givers- Eve Gandolfo, PT
• 11:15 AM: Break
• 11:30 AM: Group Activity (Role Play): Effective Communication with Doctors and Caregivers
• 12:30 PM: Lunch break and industry presentations
• 1:15 PM – 3:15 PM: Monuments Sightseeing Cruise
Afternoon activities: Understanding Gaucher disease and You
• 3:30 PM: Activity - Mindfulness for Stress Management; All age groups - Eve Gandolfo, PT
• 4:15 PM: Panel Discussion: Balancing Treatment and Daily Activities
• 4:45 PM: Award Ceremony for Participation and Achievements
• 5:00 PM: Adjourn