We have some very exciting news from Oregon! Dr. Susan Benes has investigated and is pleased to recommend the Intercranial Hypertension Research Foundation whose primary focus is to create and manage a registry of as many people with psuedotumor cerebri (they use the new disease name of I.I.H.: Idiopathic Intercranial Hypertension), having lived with PTC so long I’m used to calling it PTC, but its all the same disease, don’t get confused by a name (see our book).
I can tell you through personal experience that to become a member of the I.I.H. registry is a long, grueling, painful paperwork process that will require both you and your primary PTC doctor filling out a boatload of forms. However, my sister, who is a medical professional, assures me that to obtain any government and N.I.H. funding, and to have results scientifically undisputed every question and every form provided is necessary. These people are serious! Hallelujah! We will never get any good research, any better treatments, or any cures for this debilitating disease until researchers have the funding and information necessary to bring us to a better day. I plead with you, sharpen your pencils and just do it!
The Intercranial Hypertension Research Foundation is a joint project of the Casey Eye Institute at Oregon Health & Science University in Portland, Oregon. The I.H.R.F. was co-founded by Dr. Emanuel Tanne, M.D., an ophthalmologist, and by Amy Louis Tanne. Their daughter, Jessica, was diagnosed with PTC (I.I.H.) in 1998. The Tannes learned that PTC is often misdiagnosed and incorrectly managed. They also became painfully aware that little money is available for research and while PTC was officially discovered 104 years ago, no drug or specific surgical procedure has ever been developed. To begin the process of joining the registry, call Brenna Lobb: Research Coordinator 503-418-2141 or email at IHReg@ohsu.edu . Mail them at:
Intercranial Hypertension Research Foundation
2510 S.W. First Avenue
Portland, Oregon 97210-4742
U.S.A.
Please email us with any information concerning any new research, treatments, approaches, etc. so that our supportive medical professionals can investigate and we can pass on quality programs, etc. to you!