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

Sponsor by

• Eli Lilly

• Sanofi US

• Takeda

• Freeline