About this Event
Rare in Motion is a free, hybrid exercise and wellness experience for people living with, or facing, mobility loss from rare neuromuscular disease. Join us in person at Luma Studios in Manhattan, or stream it free on the Health Haven app.
One day. Three ways forward.
Move with confidence: live, adaptive exercise demonstrations from Health Haven's neuro-physiotherapy team (Shayan Labastchi, DPT, and DiCarlo Howard), with practical strategies for strength, mobility and independence.
Support the whole person: an honest conversation about emotional wellbeing with Chris Anselmo, founder of Hello, Adversity.
Understand what's next: expert discussion on shared symptoms, differential diagnosis and the latest research shaping care, moderated by Nina Wachsman, founder and CEO of Know Rare.
Who it's for: patients, caregivers, families, clinicians and advocates in MMN, CIDP, GBS, LGMD, DMD/Becker, NMOSD/MOG, ALS, SMA, Myasthenia Gravis, Myositis and related conditions.
Joining virtually? Choose the Virtual ticket. You'll receive a Health Haven app link before the event and can submit questions for the speakers live.
Agenda
🕑: 05:15 PM - 05:30 PM
Welcome & intro
Host: Know Rare & Health Haven
🕑: 05:30 PM - 06:00 PM
Workshop 1: Exercise with rare neuromuscular disease
Host: Shayan Labastchi, DPT & DiCarlo Howard
🕑: 06:00 PM - 06:15 PM
Exercise Q&A
Host: Ed Gent (moderator), Shayan Labastchi & DiCarlo Howard
🕑: 06:15 PM - 06:30 PM
Breakouts
Host: Shayan Labastchi & DiCarlo Howard
🕑: 06:30 PM - 06:40 PM
Scientific & clinical discovery
Host: Moderated by Nina Wachsman, Know Rare
🕑: 06:40 PM - 06:50 PM
Break
🕑: 06:50 PM - 07:05 PM
Workshop 2: Emotional health
Host: Chris Anselmo, Hello, Adversity (joining remotely)
🕑: 07:05 PM - 07:15 PM
Emotional health Q&A
Host: Moderated by Nina Wachsman, with Chris Anselmo
🕑: 07:15 PM - 07:25 PM
Research update
Host: Moderated by Nina Wachsman, Know Rare
🕑: 07:25 PM - 07:30 PM
Closing remarks
Host: Know Rare & Health Haven
🕑: 07:30 PM - 08:00 PM
Networking
Event venue & nearby stays
Luma Studios, 307 West 38th Street, New York, United States
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