The Information is completely outdated. When I offered to help get new information, and join to help spread awareness, and help fundraise, the response I received was shocking. I will be creating a IH foundation that is up to date and ACTUALLY HELPS PATIENTS!
Please do not waist your time or money on a group that should have been completely dismantled YEARS ago!
Wouldn't give them a penny again ~ thousands of dollars have been donated to them by my family, friends and benefits!!!! They don't answer emails, their website is dated by at least 8 years, they block anyone who asks questions about how they're spending money on Facebook and I could go on and on!!!! And it isn't just me ~ the entire community on Facebook is wondering why they keep asking for money and then disappearing. And last, the main person in charge has another company called IHRF Research ~ explain that, he won't!!! This is just one man working out of his basement. This family has deceived a lot of people!!!!
Review from Guidestar
There are limited doctors who understand intracranial hypertension. I was dealing with this process for about a year and a half; diagnosed that is anyway. My condition took a huge change with extreme vertigo, hand tremors,memory issues and a vast array of strange symptoms. Before April 2010, I had lost about 4 whole months. I lived day to day; but if it wasn't something huge, I wouldn't remember it. I had seen several doctors in my area; but none of them wanted to help with fixing the issues. Most told me that because I didn't fit "gold standards" that it was not the route to take and ultimately told me that this was my life and deal with it. It was in July of 2010 that I contacted the Research Foundation. I left a message and figured well, i probably won't hear back. Within a day I had a message on my voice mail with a number to call. I spoke with Dr. Tanne for over an hour and a half. It was such a relief; he validated what I was experiencing and directed me to Ohio State to see Dr Katz. Best phone call ever ! He gave me the key to unlock that huge locked door in front of me.
My daugher has IH and suffered for 5 1/2 years. The IHRF Foundation has been a great asset for us. They have wonderful people that can help us to have a knowledgable person to talk to about what is happening with our daughter. The support team is awesome.