In the News (continued)
The Liverpool Review: Rare Disease Day 2011
Liverpool Review: Day Set Aside To Acknowledge Rare Diseases Day Set Aside To Acknowledge Rare Diseases February 24, 2011 By Katie Schwendeman (Editor’s Note:This story can also be found at the Liverpool Review.) EAST LIVERPOOL - Last spring, East Liverpool resident Lisa Utt sat in her car in the parking lot of a local doctor’s office crying so hard she couldn’t drive home. A visit to...Read More »
Two Registry Studies Are Published
Two IH Registry Studies Published in Obesity Review & Journal of Women's Health: Total Economic Costs of IIH in US Exceeded $444 Million in 2007 October 27, 2010—Two IH Registry studies, examining different aspects of IH, have recently been published in two major medical journals, Obesity Review and the Journal of Women’s Health. This marks the first time that research studies have...Read More »
IH Registry Provides Research Resource Data to eagle-i Consortium
IH Registry Provides Research Resource Data to NIH-Funded Database Built By OHSU, Harvard, 7 other institutions Innovative eagle-i Consortium’s purpose is to make researchers aware of valuable biomedical resources and accelerate research April 30, 2010—The majority of existing research resources cannot be found easily, using university websites, the scientific literature, or Internet search engines. The IH Registry was established with the goal of...Read More »
The Columbian: Vancouver Family Combats Rare Hypertension Condition
The Columbian: Vancouver Family Combats Rare Hypertension Condition Patients With Little-Understood Agonies Find Community January 10, 2010 By Scott Hewitt Columbian Staff Writer (Editor’s note: This story originally appeared at http://www.columbian.com/news/2010/jan/10/vancouver-family-combats-rare-hypertension/ ) Portland, OR — Jessica Tanne’s headaches were beyond horrible. The Vancouver native was at college in New York City when she became debilitated by brain pain that knocked her life out from under...Read More »
IHRF Selected to Receive $25,000 in Round One of Chase Community Giving on Facebook
IHRF Selected as Top 100 Charity in Round One of Chase Community Giving on Facebook More than 1 million Facebook users selected 100 top charities from over 500,000 organizations December 16, 2009 - The Intracranial Hypertension Research Foundation (IHRF) was selected as one of 100 top charities that will each receive a $25,000 grant from Chase and now have a chance to...Read More »
Oregon Lions Award IHRF Co-Founder Highest Honor
Lions Eye Bank of Oregon Award IHRF Co-Founder Highest Honor Emanuel Tanne, M.D. Named 2009 Bev Thoman Awardee October 2, 2009—The Lions Eye Bank of Oregon has presented the Bev Thoman Award to Dr. Emanuel Tanne, IHRF’s co-founder. The Bev Thoman Award is given annually to an individual recognized for his or her outstanding devotion to the mission and development of the...Read More »
IH Registry Neuro-Imaging Library Surpasses 4000 Images
IH Registry Neuro-Imaging Library Surpasses 4000 Images; Two New Studies Underway Sept 30, 2009—The Neuro-Imaging Library, a joint project of the IH Registry and the Neuro-Radiology Department at Oregon Health & Science University, has now collected more than 4000 imaging studies from patients with chronic IH enrolled in the IH Registry. Founded in 2007, the Neuro-Imaging Library contains MR, X-Ray and CT...Read More »
September 2009 is Designated as IH Awareness Month
IHRF, IH Brain Pain Team Sponsor September 2009 as IH Awareness Month August 25, 2009—September 2009 has been officially designated as IH Awareness Month, designed to raise the general public’s awareness about chronic intracranial hypertension (IH). The month-long campaign for awareness is sponsored by IHRF and the IH Brain Pain Team, an online awareness and support network founded by the Richardson...Read More »
Missouri Teen Honored by Girl Scouts For IH Advocacy
Young woman with IH exemplifies "courage, confidence and character" April 23, 2009—Missouri resident Hanna Richardson was recently awarded the 2009 Girl of Distinction award in the category of Inspiration from the Girl Scouts of Eastern Missouri, for her work as an IH advocate. The award is given annually to 20 girls and women who display “courage, confidence and character,” and whose efforts...Read More »
Orphan Drug Act Gives Hope to Patients with Rare Diseases
Landmark legislation gives hope but changes still needed in IH treatment February 12, 2008 By Lianna Haywood (This article appears at www.ohsu.edu) Imagine having double-vision, headaches so severe nothing can help them, and hearing a whooshing and pounding so loud you can’t fall asleep. And then imagine visiting multiple doctors and being told nothing was wrong with you. This is a normal scenario for patients...Read More »
IHRF and The American Academy of Neurology
IHRF To Attend American Academy of Neurology Annual Meeting, April 27-30, 2009 April 2009—IHRF will be among the non-profit organizations represented at the American Academy of Neurology (AAN) 61st annual meeting, which will be held in Seattle, Washington, April 25- May 2. IHRF will staff a table during the week (April 27-30), and will offer information about our organization; the IH Registry...Read More »
IHRF Joins the American Brain Coalition
IHRF Joins The American Brain Coalition (ABC) April 2009—The Intracranial Hypertension Research Foundation has recently joined the American Brain Coalition (ABC), a national, non-profit advocacy organization, which represents many of the country’s leading professional neurological associations and patient organizations. Originally established in 2000 by the American Academy of Neurology (AAN) and over 50 professional and patient organizations, the American Brain Coalition’s mission is...Read More »