Community Education & Connection
A community space for patients, caregivers, and artists living with complex brainstem and spinal conditions.
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.
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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 f