The IHope Foundation is a patient advocacy group created by 20-year-old IH survivor Kathi Kayo, 

and led by a team of IH'ers and carers.

Our Mission

To educate the community about Intracranial Hypertension, raise awareness, and provide support for IH'ers and their families.

Our Objectives

1)  Educate the community about IH, raise awareness of IH, and advocate for IH patients in the hope of finding a treatment and a cure
2)  Connect IH families with existing rare disease communities and programs
3)  Provide grants for assistance with medical expenses including surgical bills, treatment-related travel expenses, prescription medicines, and IH service/assistance dogs


Kathi Bear by TG Bears
Kathi Bear is an IH Ambassador.  Her job is to comfort IH patients and raise awareness of IH wherever she goes.  You can help us send a handcrafted Kathi Bear to an IH'er who is going in for surgery or is hospitalized for IH-related complications.  Visit our IH Ambassadors page for details.


You can get a cute, cuddly Kathi Bear for yourself or a loved one by clicking below.  Shipping is included in the purchase price, and $20 from the sale of every Kathi Bear is donated to The IHope Foundation.


Want to share the adventures of your own Kathi Bear?  Send your pics and stories to us at -- they just might end up on our blog!

CLICK HERE to follow the adventures of Kathi Bear as she explores places near and far!  


Click the TG Bears link above to order ANY bear (Charity bears excluded) and designate 20% of the proceeds to be donated to The IHope Foundation.

Why a Sunflower?

Kathi LOVES sunflowers.  Just seeing them makes her heart happy.  So when we started talking about logos and visuals for her foundation, the sunflower naturally came to mind.  We wanted to have the IH ribbon as well, since this is an IH-specific foundation, so combining the two was sort of a no-brainer.  Pardon the pun.  Kathi sketched the idea as soon as we got home from the Patient Advocacy Summit, colored it in, et voila!  Her logo was born!

Click here to read Kathi's story

on the Global Genes Project website.


CLICK HERE for an update to her story

on the Global Genes Project website.

Dr. Aylward from Nationwide Children's Hospital explains Intracranial Hypertension with help from Chloe, a young IH'er, and her mom.

Sign the Petition to make IHope Day an annual IH awareness day






JUNE 25th