In a powerful full-circle moment, a CIDP patient and dedicated GBS|CIDP Foundation volunteer, Amanda, returned to Mount Sinai Hospital in New York City—not as a patient this time, but as an advocate. She attended the annual Mount Sinai Spinal Cord Injury (SCI) Research Fair to raise awareness about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and to share the Foundation’s Be the Bridge program with healthcare professionals.
The SCI Research Fair brings together researchers, clinicians, advocates, and individuals living with spinal cord injuries from across the New York metropolitan area. The event showcases cutting-edge research and fosters collaboration across the broader neurological and rehabilitation communities. While GBS and CIDP affect the peripheral nervous system rather than the spinal cord, the shared challenges—like mobility limitations, rehabilitation, and quality of life—create natural connections between these communities.
For this volunteer, the experience was deeply personal:
“In late September of 2022, I was admitted to Mount Sinai Hospital and that was where I received my CIDP diagnosis. Shortly after I got my initial IVIG loading dose and IV steroids, I was cleared to leave the Neuro floor and sent to KCC2—the inpatient rehab at Mount Sinai, which is actually the floor for spinal cord injury. At this fair, I was able to see some of the familiar staff, and it was great to reconnect.”
In addition to reconnecting with her care team, she engaged with attendees about Be the Bridge, a Foundation program that connects newly diagnosed patients with trained peer mentors. The response was overwhelmingly positive, as many healthcare providers were learning about GBS and CIDP for the first time. The event also featured other community organizations, rehabilitation services, adaptive sports programs, and new technologies—many of which could benefit the GBS|CIDP community as well.
“I felt that it would be helpful also to GBS and CIDP patients, as mobility and socialization are obstacles we go through as well.”
Events like the SCI Research Fair highlight the importance of cross-community collaboration. By participating, the Foundation continues to build bridges, raise awareness, and promote access to resources for those affected by rare peripheral nerve disorders.
Joining our May Awareness campaign is as easy as filling out the form below and ordering awareness brochures. You can hand deliver to your local professional healthcare community (primary care, neurologists, physical & occupational therapists, anyone in your circle of care).
Learn more and order here: https://gbscidp.tfaforms.net/4986062 . If you live outside of the US please contact info@gbs-cidp.org and we will be happy to provide an electronic version.