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INTRACRANIAL HYPERTENSION RESEARCH FOUNDATION

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Nonprofit Overview

Causes: Brain Disorders Research, Eye Diseases, Blindness & Vision Impairments Research, Philanthropy, Voluntarism & Grantmaking Foundations

Mission: The Foundation has a 3-fold mission:--To catalyze and to directly fund new research that will lead to improved understanding of intracranial hypertension (IH), and to more effective therapies for those who have this disorder; --To educate the medical community and the general public with the facts about IH and to raise public awareness of the impact of this condition on the lives of those who develop it; and--To assist the IH community, including patients, their families, and their care teams, in better serving the medical needs of persons with IH. We serve all persons with IH, a chronic disorder defined as abnormally high cerebrospinal fluid pressure. The disorder can be triggered by a host of insults to the brain, including chemical, physical, and biological triggers, and often leads to loss of vision (blindness), significant neurological difficulties, and excruciating headaches. Those with IH are frequently disabled.

Programs: The foundation (ihrf) maintained and expanded its website (www. Ihrfoundation. Org) and facebook with new information in an effort to disseminate, educate and update physicians, researchers, patients and other organizations. There were approximately 213,372 person visits from 202 countries with 267,202 sessions and 446,502 page views in 2017. To keep patients up to date, ihrf continues to publish a newsletter providing new general information and presents reviews of newly published medical literature. Ihrf continues its service of responding to patients, physicians, researchers and others whose inquiries made up more than 2500 telephone calls and email communications in 2017.

the intracranial hypertension registry, a research program co-sponsored with the casey eye institute, is located at the oregon health & science university medical center (ohsu). It also provides a newsletter to patients enrolled in the registry. It is designed exclusively for intracranial hypertension research. It contains the largest number of chronic ih patients worldwide. It has increased its enrolled patient data base to over 2,550 enrollees from 41 different countries, adding about 7-10 new patients each month. The registry also collects extensive medical data and imaging studies on each enrollee. Imaging studies are filed on a pac system at the neuro-radiology department at ohsu. It is most likely the largest imaging collection in the world on ih patients, numbering approximately 15,500 in 2017. The registry presently has 6 research projects underway. "emergency room utilization among individuals with idiopathic intracranial hypertension" was accepted for publication int he international journal of health care quality assurance. Additionally, three other research projects are nearing completion; 1-"causes of death of ih patients enrolled in the iih registry", 2-"incidence of chiari development resulting in suboccipital decompression surgery in iih enrolled registry patient", 3-"analysis of long term outcomes of bariatric surgery in iih enrolled registry patiens". The registry is staffed by a volunteer medical director, 2 full time research coordinators, 10 volunteer pre-med students, volunteer seniors in need of skill retraining for future employment and physician volunteers. The registry continues to be involved in collaborative research, working with a number of academic institutions including weill cornell medical school-nyc, chicago medical school-rosalind franklin university and hofstra northwell school of medicine-nyc.

Community Stories

3 Stories from Volunteers, Donors & Supporters

2 Dori Harrison C.

Volunteer

Rating: 1

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

Client Served

Rating: 5

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.

7

Client Served

Rating: 5

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.