Community Education & Connection
A community space for patients, caregivers, and artists living with complex brainstem and spinal conditions.
Important Update: Transition to NEON ONE
We're making a change to better serve you. Effective immediately, we'll be transitioning from our previous community app to NEON ONE for our case management communications.
This change ensures enhanced security for your personal and health information through full HIPAA compliance with a Business Associate Agreement (BAA), providing you with better protection of your privacy. We're committed to safeguarding your information while continuing to provide you with excellent support.
If you have any questions about this transition, please don't hesitate to reach out. Thank you for your understanding.
Help us build support that’s actually useful.
Take our 3–5 minute survey to tell us what you need, what hasn’t worked, and what we should prioritize next.
Responses are reviewed privately by our team.
Please read the survey introduction before you begin for full details on how we use and protect responses.
Scan to view, mobile friendly
Survey is for:
Patients
living with neuro-complex and brainstem-related conditions, whether or not you have a clear diagnosis yet
Caregivers and family members
supporting someone with paralysis, Dysautonomia, dystonia, severe fatigue, or complex pain.
Artists and creatives
navigating adaptive setups, career disruption, and identity shifts due to health.
Clinicians and allies
who want a window into lived experience and community needs, in a respectful, non-extractive way.
Connect with peers
Join topic-based spaces and threads with others facing similar symptoms, procedures, and day-to-day barriers.
Sign up for Neurocomplex Peer & Psychosocial Support Circles
Reserve a spot in facilitated virtual circles for patients, caregivers, and artists focused on ambiguous loss, appointment prep, documentation, burnout, and adaptive living.
Access curated resources
Find plain-language guides, checklists, and tools related to brainstem/CCI, tethered cord, dystonia, paralysis, and complex diagnostic journeys.
Stay up to date on programs & events
Get updates on ConcertStories performances, podcast episodes, workshops, and advocacy opportunities hosted by InclusiVibe Foundation.
Share lived experience that can shape better care
Optional prompts and feedback forms let you share patterns, questions, and barriers you’re facing. These de-identified insights help inform our education, advocacy, and research briefs.
Join our community:
Our community meets you where you are through the InclusiVibe Collective Facebook group for peer connection and support, and our secure NEON ONE portal for upcoming meetups & events. Whether you're seeking community, information, or direct support, we're here to walk alongside you on this journey.