Look, feel & perform like 1 in a million
Rare in Motion
Moving forward, physically and emotionally
A hybrid exercise and wellness experience for people living with, or facing, mobility loss from rare neuromuscular disease.
Presented by Health Haven + Know Rare
Sunday
OCT 18
5 to 8pm ET
Positive Exposure Gallery
4th Floor, 83 Maiden Ln
New York, NY 10038
On the Health Haven App
About The EVent
One day. Three ways forward.
Designed to turn expert knowledge and lived experience into practical tools patients and caregivers can use beyond the event.
Move with confidence
Live, adaptive exercise demonstrations led by Health Haven's neuro-physiotherapy team, with practical strategies for strength, mobility and independence.
Support the whole person
Honest conversations about emotional wellbeing, with a patient-focused session featuring Chris Anselmo
Understand what's next
Expert discussion on shared symptoms, differential diagnosis and the latest research shaping care across rare neuromuscular conditions.
Who it's for
Patients, caregivers, families, clinicians and advocates
Whether you're living with a rare neuromuscular condition, caring for someone who is, or supporting this community professionally, there's a place for you in the room.
Built for access
Join us in person, or from wherever you are
Join in person at Positive Exposure Gallery in New York City or participate remotely through our livestream. The hybrid format extends practical guidance, expert insight and community connection beyond the room.
In person
Positive Exposure Gallery
4th Floor, 83 Maiden Ln
New York, NY 10038
Livestream
On the
Health Haven App
Sunday, October 18 · 5 to 8pm EST
The agenda
An evening of movement, conversation and connection, led by patients, founders, advocates and neuro-physiotherapists sharing what they've learned, lived and built.
Speakers
Nina Wachsman
Founder and CEO of Know Rare
Edward Gent
MMN patient, Founder of Health Haven
Chris Anselmo
LGMD patient, Founder of Hello, Adversity
Amanda Coronado
CIDP patient, rare disease advocate
Shayan Lebastchi
DPT, Columbia University & Neuro PT
DiCarlo Howard
DPT Student, LIU Brooklyn and Neuro PT
Schedule
5:15 to 5:25 PM
Welcome & intro to Know Rare
Nina & Jake Wachsman
5:25 to 5:30 PM
Agenda & intro to Health Haven
Edward Gent
5:30 to 5:45 PM
Finding your voice & community, plus Q&A
Amanda Coronado
5:45 to 6:15 PM
Workshop 1: Exercise with rare neuromuscular disease
Shayan Lebastchi, PT, DPT & Howard DiCarlo
6:15 to 6:30 PM
Exercise Q&A
Shayan Lebastchi, PT, DPT & Howard DiCarlo
6:30 to 6:35 PM
Break
6:35 to 6:55 PM
Scientific & clinical discovery
Madeline Galbraith, Weill Cornell; Argenx (speaker TBD); Nina Wachsman
6:55 to 7:10 PM
Workshop 2: Emotional health
Chris Anselmo, Hello, Adversity
7:10 to 7:20 PM
Emotional health Q&A
Chris Anselmo
7:20 to 7:25 PM
Closing remarks
Edward Gent & Nina Wachsman
7:25 to 8:00 PM
Networking & questions
All
Supported by
Partners & sponsors
Sponsorship packages available
Help people living with rare neuromuscular disease move forward, and put your organization alongside this community.
Become a SponsorFAQs
Frequently asked questions
Who is this event for?
Rare in Motion is for anyone living with, or facing, mobility loss from a rare neuromuscular condition, such as MMN, CIDP, GBS, LGD, DMD, NMOSD/MOG, ALS or SMA. Caregivers, family members, clinicians and advocates are warmly welcome too. You can join us in person at Positive Exposure Gallery in New York City or take part remotely through the livestream.
Is the venue wheelchair accessible?
Yes. Positive Exposure Gallery is on the 4th floor of 83 Maiden Lane, with elevator access from the lobby.
How do I get there by public transit?
Positive Exposure Gallery is at 83 Maiden Lane (4th Floor) in Lower Manhattan, between William and Pearl Streets. By subway, take the 2 or 3 to Wall St, or the A, C, J, Z, 2, 3, 4 or 5 to Fulton St, and walk about 3 to 5 minutes. The Staten Island Ferry and PATH (World Trade Center) are also nearby.
What is the closest accessible train station?
Fulton St (A, C, J, Z, 2, 3, 4, 5) is the closest accessible station, with elevators at the Fulton Center, about a 5-minute walk from the gallery. Check elevator status at mta.info before you travel.
About the organizers
Partnering to Support the Neuromuscular Community
Know Rare
Know Rare is a global support network connecting people living with rare diseases, their families and caregivers with the tools, knowledge and researchers they need. From the Healthstory AI journaling app to the Rare Research Finder for clinical trials and expert care, Know Rare helps the rare community find answers, connection and hope.
Visit Know Rare
Health Haven
Health Haven was founded by Edward Gent, a sports nutritionist living with Multifocal Motor Neuropathy (MMN), after he saw how hard it was for people with rare conditions to find support that truly understood them. The Health Haven app offers medically verified content, vetted coaches, therapists and health experts, and a community that gets it, plus in-person events for rare disease patients.
Visit Health HavenRare in Motion · Sunday, October 18, 2026 · 5 to 8pm ET
Sign up and save your spot.
Join the rare disease community for an evening of movement, connection, and hope. Come in person at Positive Exposure Gallery in New York City or tune in from anywhere on the livestream. Reserve your ticket below to be part of it.
Presented by Health Haven + Know Rare
Hosted at
Positive Exposure Gallery · 4th Floor, 83 Maiden Ln, New York, NY 10038