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Groups > BIH PTC > Discussions > Topic: News from the IHRF
Topic: News from the IHRF

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Rain R.	July 21, 2006 2:55 PM Search For Answers At GoodSearch.org and Help Fund IH Research Did you know that finding answers to your most pressing questions and raising money for IH research are just a few key strokes away? GoodSearch.org is a non-profit organization that has developed a search engine (powered by Yahoo Search) with a charitable aim. GoodSearch and its innovative idea have recently been featured in the Wall Street Journal, the New York Times, O Magazine and Fortune. Here’s how it works: For every Internet search performed using GoodSearch, one penny is donated to a charity of choice. (The Intracranial Hypertension Research Foundation is now on GoodSearch’s list of charities.) Pennies add up and there’s no cap on how much money can be donated. Best of all, it is absolutely free to use. For more information, please visit www.goodsearch.org and start searching! eBay and IHRF Join Together to Raise Dollars for IH Research The next time that you decide to clean out your closet and sell a few things on eBay, you not only gain more space and a few bucks; you can also help fund IH research. eBay has teamed up with the non-profit MissionFish to give eBay members the opportunity to donate a portion of the money they receive from the sale of any item to their charity of choice You can designate a percentage of a! sale to be sent directly as a donation to the Intracranial Hypertension Research Foundation. eBay takes care of the rest. As with any donation made to IHRF, it is tax-deductible and you will receive a receipt. Every item designated as an IHRF Giving Works sale will be listed on both the eBay and MissionFish sites. For eBay members in the U.K., you must register with both the U.K. and U.S. eBay sites to take advantage of this donation opportunity. For more information, please visit http://givingworks.ebay.com/sell/ and scroll down the page for step-by-step instructions. www.ihrfoundation.net [ send green star]
Rain R.	January 11, 2006 2:47 PM Why does chronic intracranial hypertension (IH) happen? Why does it only affect some people and not others? Is IH genetic? What’s the relationship between weight and intracranial hypertension? Are there medications I should avoid? Am I at a higher risk for other diseases or disorders? Will I lose my eyesight? Are there better treatments for intracranial hypertension? Why doesn’t my doctor understand what’s happening to me? When will I get better? Can they find a cure? If you’ve ever asked yourself these questions, then you know how difficult it is to struggle with intracranial hypertension. The answers can be found, with your help. The key is medical research, which is why the IH Registry was established. It is the first and only medical registry of its kind in the world today. WHY YOUR PARTICIPATION MATTERS A medical registry is a collection of medical data for a specific disease or disorder. Researchers use the information to study patients, learn about the disease/disorder and develop better treatment options. It is a vital tool in the search for a cure. Each person is important in the IH Registry because every medical history is unique and adds to our knowledge of intracranial hypertension. WHO IS ELIGIBLE Any person with chronic intracranial hypertension documented by a physician is eligible to join the IH Registry. This includes people with idiopathic intracranial hypertension of unknown origin (also known as pseudotumor cerebri or benign intracranial hypertension), as well as those with secondary intracranial hypertension due to an underlying medical condition or trigger. IH patients of any age, body type, gender or nationality are eligible to enroll. There is no cost to enroll in the IH Registry. The IH Registry is a joint project of the Intracranial Hypertension Research Foundation and Oregon Health & Science University and fully complies with federal HIPAA privacy regulations. BENEFITS TO ENROLLING •Participate in the search for better treatments and a cure, including clinical trials •Demonstrate that IH affects a significant number of individuals •Expand knowledge about IH TO ENROLL Please call the IH Registry office at 503.418.2141 or send an email to: IHREG@ohsu.edu THANK YOU FOR YOUR PARTICIPATION! * * Note: If you are already enrolled in the Registry please accept our apologies for this email and THANK YOU! [ send green star]
Rain R.	January 11, 2006 2:13 PM Hot off the presses, the IHRF winter newsletter is now posted to our website at: www.ihrfoundation.org. This special research edition covers IH research presentations and discoveries from the recent Neural Hydrodynamics Symposium, which was co-sponsored by the Foundation. You can read about topics including new approaches to CSF outflow research, innovations in visual field technology and an examination of the role of Vitamin A and IIH. Plus, several studies analyze important data from the IH Registry and shed light on brand new information concerning surgery outcomes and a possible new association between strep infections and IIH. There’s much more. Please visit www.ihrfoundation.org and check it out for yourself! Intracranial Hypertension Research Foundation [ send green star]
Rain R.	January 11, 2006 2:07 PM Subject: Research News from the Third Annual Neural Hydrodynamics As the year draws to a close, we have been hard at work in an effort to bring you news of some of the latest and most important work that we do: fostering IH research. IHRF has co-sponsored the Neural Hydrodynamics Symposium since its inception in 2002. This two-day conference for researchers focuses on the causes, diagnosis and management of disorders caused by elevated intracranial pressure, including idiopathic and secondary intracranial hypertension. The 2005 Symposium attracted more than 40 participants from 27 institutions and universities in the U.S. and Canada. Additionally, data from the IH Registry was used in several research projects. In the next few weeks, you will be able to read about the presentations made at the Symposium in a research edition of our newsletter, which will be posted on our website. (We will announce when it has been posted.) Here’s a sample of some Symposium highlights: • The Lymphatic System and CSF Absorption • Innovations in Visual Field Testing • Analysis of Stent Therapy in IIH Patients • A Possible Association Between Strep Infections and Intracranial Hypertension There is much more. Stay tuned. A reminder about our Challenge Grant: all new or increased gifts will be matched if made by Saturday, December 31, 2005. Plus, if you make a donation to IHRF by December 31, 2005, you may be eligible for a 100% adjusted gross income deduction. Under the Katrina Tax Relief Act of 2005, taxpayers who itemize their deductions can deduct charitable gifts made in 2005 up to 100% of their adjusted gross income (AGI), rather than the usual 50%. That means 100% of your donation may be eligible for a deduction. For more information on the Katrina Tax Relief Act, check with your tax advisor. To donate to IHRF, please visit our website: www.ihrfoundation and click on “I wish to donate” or call IHRF directly at (360) 693-IHRF. Thank you and best wishes for a happy, healthy new year. The Board of Directors, IHRF [ send green star]
Rain R.	December 15, 2005 6:46 AM Dear Friends, The Intracranial Hypertension Research Foundation is pleased to announce that we have reached 30% of our goal towards the 2005 Challenge. We are off to a great start as we move into "prime time" for annual charitable donations, and remain confident that we can reach our goal. If you have already contributed to the Challenge - thank you! If you haven't already done so, please donate before the end of the month to assure your gift is eligible for the match and tax deductible for 2005. You can easily donate on our web site at: https://www.ihrfoundation.org/involved/donations.asp. Our efforts to raise the public's awareness of IH are now beginning to pay off. The Foundation was recently mentioned in the Wall Street Journal. Additionally, one of our Scientific Advisors, Dr. Conrad Johanson, was recently awarded the prestigious 2004 Award of Distinction for Excellence in CSF Physiology-the Robert H. Pudenz Award. And our own Dr. Emanuel Tanne has been invited to make a repeat appearance on the Odyssey on Health radio broadcast series, to answer callers' questions about IH and to talk about our community and the challenges we face. Some families have recently celebrated the holiday season in a novel way: they donated to the Challenge, in lieu of sending the traditional holiday gifts to their friends and family. And they encouraged their friends to do so, too. If you are still searching for just the right gift, you may want to consider using this way to remember your friends and family during the holidays. It's a tax-deductible gift that's always the right color, always "fits" - and never goes out of style. And there’s no wrapping required or shipping charge to pay. Call us at 360-693-IHRF (4473) with their names and we will acknowledge the donation with a beautiful card letting them know of your gift. We send our warmest regards to you and your family during this holiday season. The Board of Directors, IHRF [ send green star]
Rain R.	November 20, 2005 8:07 AM Dear Friends, We are pleased to announce that in the few weeks since the announcement of our 2005 Challenge Grant, IHRF has already raised about $10,000.00 meaning about $17,000.00 in new funds for our work. With your support, we can reach our goal before the Grant ends in December. If you haven't already donated, please respond to the Challenge so your contributions can be matched! Some patients and families are helping to raise funds for the Foundation and the Challenge Grant by enclosing a donation envelope with IHRF literature in their holiday cards. Please contact us. We are happy to mail envelopes, our letters including our cover letter and "Holly's Birthday Wish" a heart wrenching story by a mother of an 11 year old girl who suffers from IH, along with her twin sister, so you have them in time to send with your holiday greetings. Lastly, donating to the Foundation has become easier, as well. IHRF is part of the eBay Giving Works Program for charities, which means if you sell an item on eBay; you can designate a percentage of the sale as a contribution to IHRF. All that you have too do is select IHRF from the list of nonprofits that are on the "Sell" Page, along with the percentage that you would like to contribute and eBay takes care of the rest. (For more information, you can visit http://givingworks.ebay.com/sell// or contact us directly.) Let everyone know that this is another option for giving to IHRF. Thank you for caring! Best Regards, Emanuel and Amy Tanne [ send green star]
Rain R.	October 30, 2005 7:50 AM IMPORTANT ANNOUNCEMENT FROM THE BOARD OF DIRECTORS OF THE INTRACRANIAL HYPERTENSION RESEARCH FOUNDATION Dear Friends, We’re writing to direct your attention to a special notice about a new CHALLENGE GRANT that has been offered to IHRF from an anonymous benefactor. This new development will permit substantial expansion of our services to the IH community, support of the IH Registry and new research. We urge you to visit the web site at www.ihrfoundation.org for details. And while you are visiting the site, please be sure to listen to the August 8th radio broadcast about IH with Dr. Tanne, on the Odyssey on Health show at www.ihrfoundation.org . We thank you for your support of our important work to find answers to this devastating disorder. Emanuel and Amy Lois Tanne [ send green star]
Rain R.	August 25, 2005 8:00 AM Rain D. THE IH REGISTRY WANTS YOU!!! June 11, 2005 12:30 PM Any patient with chronic intracranial hypertension documented by a physician is eligible to join the IH Registry. This includes patients with intracranial hypertension of unknown origin (also known as idiopathic intracranial hypertension, pseudotumor cerebri, or benign intracranial hypertension), as well as patients with secondary intracranial hypertension due to an underlying medical condition or trigger. IH patients of any age, body type, gender or nationality are eligible to enroll. BENEFITS TO PATIENTS ENROLLED IN THE IH REGISTRY • Demonstrate that IH affects a significant number of individuals • Expand knowledge about IH • Participate in the search for better treatments, including clinical trials WHY YOUR PARTICIPATION MATTERS A medical registry is a collection of medical data for a specific disease or disorder. Researchers use the information to study patients, learn about the disease/disorder and develop better treatment options. It also is a vital tool in the search for a cure. There is no cost to enroll. The IH Registry is a joint project of the Intracranial Hypertension Research Foundation and Oregon Health and Science University and fully complies with federal HIPAA regulations. Each person is important in the IH Registry because every medical history is unique and adds to our knowledge of intracranial hypertension. Please take the time to enroll and encourage others with IH to do the same. The more knowledge we gain, the closer we come to a cure. TO ENROLL: To directly download the patient questionnaire and consent forms, please visit <www.ihrfoundation.org>. (On the home page, double click on “Read Latest News” box in the top right-hand corner.) If you need the forms sent by regular mail, please call the IH Registry office at 503.418.2141 or email: IHREG@ohsu.edu. THANK YOU FOR YOUR PARTICIPATION! ______________ ______________ ______________ ______________ www.ihrfoundation.org [ send green star] [ send green star]
Rain R.	August 25, 2005 7:58 AM Rain D. June 07, 2005 1:30 PM Glad you found it informative Martin. I find knowledge is a powerful tool; especially with something like BIH...it's amazing how few medical people have actually heard of it! [ send green star] [ send green star]
Rain R.	News from the IHRF August 25, 2005 7:55 AM Rain D. News from the IHRF May 23, 2005 1:39 AM Latest email received from the Intracranial Hypertension Research Foundation... Hello The Spring 2005 IHRF newsletter is now out! Inside you'll learn about cutting-edge IH medical research by IHRF Scientific Advisor Dr. Steven Katz, Dr.Deborah Gryzbowski and Dr. Martin Lubow. You can also read about the first IH genetics study and how you may be eligible to participate. Find out the latest progress on our search for an animal model. Plus, Dr. Susan Benes compares outcomes from optic nerve fenestrations and shunt surgeries, using data from the IH Registry. To read these articles and others, visit <www.ihrfoundation.org> and click on "Foundation News." We hope you like the new and improved newsletter. Your comments and ideas are always welcome. The Intracranial Hypertension Research Foundation ______________ ______________ ______________ ______________ www.ihrfoundation.org [ send green star] Solent S. May 23, 2005 2:23 AM Thank you Rain .... I took a look and will get it sent to me infuture. Martin. [ send green star] [ accepted] [ send green star]

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