Brainstem Compression: finally Seen and finally Heard

For too long, brainstem compression has been under-recognized and misunderstood — often leading to misdiagnosis, delayed care, and years of ineffective treatment. Patients may experience dizziness, dysautonomia, fatigue, swallowing difficulties, headaches, and cognitive changes — symptoms that reflect impaired function at the brainstem and upper cervical spine.

While this condition is a key focus of our work, it’s part of a larger pattern we see across complex neurological conditions — including Ehlers-Danlos syndrome (EDS), craniocervical instability (CCI), atlantoaxial instability (AAI), tethered cord syndrome (TCS), and other under-recognized disorders. When symptoms remain invisible, care is delayed, and lives are impacted.

Hello — I’m Amy Wang-Hiller.

I’m the founder of InclusiVibe Foundation. But I am also a professional violinist, violin teacher, and doctoral student at the University of North Texas. My dissertation focuses on adaptive violin performance practice and inclusive music education — a passion shaped by my own journey as a high-level quadriplegic living with complex neurological conditions.

I’m also the creator of the InclusiVibe Musician Podcast and the Hidden Diagnoses Impact Podcast, where we share the voices of musicians, patients, and healthcare professionals to inspire change. Since 2024, I’ve met countless patients like me — some with milder symptoms, and others who, as our cofounder Susan has witnessed firsthand through her years of advocacy, have tragically passed away.

Their stories make it clear: we cannot wait for change to happen — we must create it.

Why This Mission Matters

As artists and musicians, we have the power to shine light on invisible illnesses and unseen disabilities. EDS, CCI, AAI, and TCS are often misunderstood or missed until they become life-altering.

Testing is not standardized. Research is underfunded. When mobility is lost, patients are often too debilitated to seek care, travel for treatment, or access life-saving surgery. And while no physician can be an expert in every rare disease, that’s exactly why awareness, advocacy, and collaboration are essential.

What We Do

The InclusiVibe Foundation bridges music, medicine, research, and advocacy to:

• Amplify patient voices through storytelling, podcasts, and media.

• Support adaptive artistry for musicians with disabilities.

• Advance rare disease awareness through concerts, creative projects, and educational programs.

• Foster collaboration between patients, artists, researchers, and healthcare professionals.

• Promote and contribute to research on EDS with CCI, AAI, Tethered Cord Syndrome, and other complex neurological conditions — from developing patient-led data initiatives to supporting interdisciplinary studies that can inform better diagnostics, treatment, and rehabilitation.

Join Us — Make an Impact

This mission belongs to all of us.

Together, we can bridge the gap between what is known and what is needed — ensuring no one facing these challenges is left without hope, resources, or representation.

We welcome:

• Volunteers who want to contribute their time and skills.

• Interns seeking hands-on experience in nonprofit operations, advocacy, media, or arts programming.

• Advisory board members who can guide our growth and expand our reach.

• Experienced nonprofit board members ready to help shape strategy and sustainability.

Let’s connect — as an advocate, volunteer, intern, or professional using your expertise to champion this cause. Your involvement helps transform unseen symptoms into seen and heard realities, driving the change patients urgently need.

Help Us Build the Vision
We’re a grassroots program with a bold dream — to unite music and medicine so that every voice is heard, every story is seen, and no one fights their illness in silence and alone. But big visions need more than passion — they need people. Your support fuels our concerts, stories, and research shaped by lived experience. Together, we can turn this vision into a reality that changes lives.

InclusiVibe™ Musician Podcast

What began as a space to explore personal development for musicians — building healthy lives with mental clarity and vibrancy — took an unexpected turn when the host faced her disability. Through candid storytelling and career pivots, the podcast now blends artistry with advocacy, offering musicians fresh insights on thriving in the industry while navigating disability in performance and education. It’s a journey of adaptation, creativity, and community for every musician with or without disability to help shape a more inclusive future in music.