What We Do

Since 2020, we have been dedicated to raising awareness about Idiopathic Intracranial Hypertension (IIH).
We strive to connect with and empower more IIH Champions—those living with this condition—while educating the public, medical professionals, and communities who may have never heard of this rare neurological disorder.

Our mission is to uncover the cause of IIH, support ongoing medical research, and help discover more effective treatments—and ultimately, a cure.

What is IIH?
Idiopathic Intracranial Hypertension is a rare neurological condition where cerebrospinal fluid (CSF) builds up in the skull, increasing pressure on the brain without an identifiable cause. This elevated pressure can lead to optic nerve swelling (papilledema), which may result in permanent vision loss or blindness.

The symptoms often mimic those of a brain tumor—without a tumor being present. Common symptoms include:

• Severe headaches, often behind the eyes

• Ringing in the ears in rhythm with your heartbeat (pulsatile tinnitus)

• Brief episodes of vision loss or blackouts

• Dizziness, nausea, and neck or shoulder pain

Through awareness, advocacy, and support, we are making IIH visible.
We believe that no one should face this condition alone. Together, we are stronger. Together, we are louder. Together, we fight for answers.