Overview
Managing Muscular Dystrophy goes far beyond routine doctor visits and medical checklists. Clinical metrics can track the condition, but they fail to capture the real story: what it actually takes to navigate daily life with MD.
The true experts are the people living it every day. Real insight comes from clever life hacks, strategies for building a career and maintaining independence, and the constant creativity needed to navigate an inaccessible world.
Skip the clinical lectures. This panel offers an authentic conversation with people who get it. Join our advocates, caregivers, and individuals living with MD as they talk openly about relationships, workplace dynamics, travel logistics, and real-world independence.
Speakers
Moderator
Patrick Moeschen
Patrick Moeschen is a retired middle school music teacher and nonprofit advocate. Patrick lives with limb-girdle 2E muscular dystrophy and advocates for individuals living with muscular dystrophy.
Panelist
Adith Thummalapalli
Adith Thummalapalli is an infrastructure engineer and Vice President of the PPMD Adult Advisory Committee. Adith lives with Duchenne muscular dystrophy and advocates for accessibility, care transitions, and independent living.
Panelist
Betty Vertin
Betty Vertin is a writer, author, and parent caregiver to three sons living with Duchenne muscular dystrophy. Betty advocates for families and caregiver support within the rare disease community.
Panelist
Kelly Berger
Kelly Berger is a community outreach team member at Cure CMD and a disability advocate. Kelly lives with congenital muscular dystrophy and works to empower individuals and families navigating rare diseases.