IHRF News and Events Archive
Texas/ June 21-22, 2008
How can I find relief for my headaches? What are the latest developments in shunt technology? What’s happening in IH research? These are some of the many topics that will be discussed at the 2008 IHRF Patient Conference, which will be held Saturday, June 21- Sunday, June 22 at the University of Texas Medical School in Houston. The two-day conference will also cover a wide variety of other topics, including an overview of the disorder and neural hydrodynamics, the latest news on treatment options, IH in children, weight management and IH research. Spaces are limited. For more details, please see General Information, Registration, Conference Program
New Hampshire/ May 17, 2008
Looking for a fun way to get involved in the search for an IH cure? It’s not too late to join Katie, Darlene, Christina and the other members of the New England IH support group for a mall walk-a-thon to raise IH awareness and money for research. The walk-a-thon will be held on Saturday, May 17 at the Mall at Rockingham Park in Salem, New Hampshire. A planning meeting will take place on Saturday, April 26, 2008. For more information, please contact Katie at 603.859.1092 or at
Oregon/ April 27, 2008
The Portland IH Group presents a free lecture by Deena Klein M.D. on depression, chronic illness and IH, with tips on what to do and where to seek help. Dr. Klein is a psychiatrist in practice for more than four decades, with an interest in clinical depression. She was also a very popular speaker at the first IHRF Patient Conference. The lecture will be held at Casey Eye Institute on the OHSU campus in Portland, Oregon at 10 AM on Sunday, April 27. To RSVP and receive driving directions, please send an email to the foundation at .
New Jersey/ Spring 2009
Volunteers are needed to help with the planning of an IH benefit cruise, slated for spring 2009! For more information, please contact Christine at .
California/January 20, 2008
The Friends Benefit 3
Four bands, a crowd of more than 300 people and one incredible night of music and awareness. The Friends Benefit Concert 3 on January 20, 2008 in Agoura Hills, California was a success by every measure, thanks to Dori Clements and her good friends, Kevin and Mare Wachs, at the Get Together Foundation, who organized their third concert to raise both awareness of IH and money for research. Dori’s son, Robbie, 18, has chronic intracranial hypertension.
The Canyon Club, the evening’s venue, donated the performance space. 
Kohl’s Department Stores graciously provided more than 20 volunteers. And the Tanne family also attended the concert.
The crowd danced to Jetstream’s modern rock, the Beach Boys-inspired sounds of Pacific and the retro tunes of Captain Cardiac and the Coronaries., the evening’s headliners, who’ve also performed at three Super Bowls. Jessica and Dane Petersen played an acoustic set, while their dad, Barry, acted as the evening’s emcee.
A self-described “mom on a mission,” Dori’s efforts have raised more than $20,000 for IH research. Her next event is scheduled for April 2008.
Special thanks to Kevin and Mare Wachs of the Get Together Foundation and Earthly Body, Barry Peterson and the Petersen family, Tim Piper, the musicians of Jetstream, Pacific and Captain Cardiac and the Coronaries.
IHRF, IH Registry Seek Participants for Diamox and Pregnancy Study
September 30, 2007—Diamox (acetazolamide) is officially designated as a Class-C drug, which means that its safety for use during pregnancy has not been established. Physicians are often reluctant to use Diamox before the 20th week because of this designation and a general lack of data on the subject. But there are few treatment alternatives since surgery with general anesthesia poses a high risk to the fetus and serial spinal taps only provide temporary relief.
IHRF and the IH Registry are seeking participants for a potential study to evaluate the safety of Diamox use during pregnancy. We are seeking women with chronic IH (either idiopathic or secondary IH) who have been pregnant at or since the time of their IH diagnosis. We are interested in both those who have and those who have not taken Diamox during pregnancy. If you meet this criteria, please take a moment to answer five short questions on our survey. Your participation could impact the way doctors treat IH during pregnancy. Thank you!
This Week News: Young Resident Suffering From Rare Disease Aims to Raise Funds, Awareness
September 27, 2007
By Robert Paschen
(Editor’s Note: This story originally appeared in This Week News, Columbus, Ohio.)
When area resident Lynnsey Schemrich found herself inside a medical helicopter in October 2001 en route to hospital after a head injury from a bike accident at Deer Creek Park, little did she know that this was the beginning of a long journey of countless surgeries, of lost friends, lost school, of persistent pain and torment.
“I went left of center to not get hit by a truck and hit my brother on his bike and hit my head on the concrete,” Schemrich, now 20, recently recalled of the accident when she was 13.
At Columbus Children’s Hospital, “I started having real bad headaches. I lost my vision. No medications got rid of the headaches.” More
Texas Teens with Rare Brain Illness Seek Hope
September 17, 2007
By Mary Ann Roser
(Editor’s Note: This story originally appeared in the Austin American Statesman.)
Intracranial hypertension causes severe headaches and can lead to blindness but has no cure.
For Michelle Tate, the start of a new school year brings fresh hope. Maybe she won’t miss the big events. Maybe she won’t lose touch with her friends. Maybe her last year of high school will be different.
If only getting out of bed weren’t so hard.
For the past four years, the 17-year-old Round Rock girl has suffered from searing headaches that often leave her too weak to shower, dress or get to school. She willed herself out of bed every day the first week this year, but she missed two days the next week.
Michelle has intracranial hypertension, an incurable illness that causes a buildup of spinal fluid in the brain and triggers headaches, nausea, fatigue and vision loss. Some patients go blind.
On many days, IH, as it is known, leaves Michelle crumpled on the bed in her darkened room. Prescription drugs sometimes help, but there are days when nothing seems to alleviate the pain.
“I’ve been sick so long, I don’t know what it’s like” to feel well, Michelle said.
The struggle to get well from uncommon diseases can be lonely for families and patients. They comb the Web for answers, search for support from others with the disease and seek out the best doctors. Michelle’s parents, Jacque and Ron Tate, went to a patient conference in Portland, Ore., in October and realized they had to get involved — for their sake and Michelle’s.
The conference, sponsored by the Intracranial Hypertension Research Foundation, prompted the Tates to sponsor a golf tournament this summer at Avery Ranch Golf Club in Austin to help the foundation raise money for research. The Tates raised $36,000 to seed a project and plan to make the tournament an annual event... More
IHRF Establishes Neuro-Imaging Library at Oregon Health & Science University (OHSU)
The Intracranial Hypertension Research Foundation (IHRF) is excited to announce the creation of the IHRF-OHSU Neuro-Radiology Imaging Library for chronic IH, which is a partnership between the Foundation and the radiology department at Oregon Health & Science University (OHSU) in Portland, Oregon. The Imaging Library will be run as a project of the IH Registry.
For the first time, researchers from around the world will have the opportunity to study MRIs, CT scans, MRVs, MRAs and other imaging studies of chronic IH patients’ brains and skulls for changes related to intracranial hypertension. Questions such as the physical progression of chronic IH, the development of an empty sella or a Chiari malformation and whether imaging can accurately indicate intracranial pressure non-invasively can be examined and may ultimately be answered by studying the collection of the Imaging Library...More
Benefit Comedy Show To Be Held October 21, 2007 in Los Angeles, CA
Looking to laugh for a great cause? The Ha Ha Benefit: An Evening of Hope and Humor will be held October 21, 2007 in Los Angeles, California and is being organized by the Rodriguez family in honor of their daughter Katie, who was diagnosed with chronic IH last year. The evening will feature a line-up of comedians who have appeared on the Tonight Show, HBO, and Comedy Central. Money raised from the event will benefit IH research. For more information about purchasing tickets, donations, or volunteering, please contact Lilly Rodriguez at
Success is a Team Effort at The First Annual ‘Chella Golf Classic
More than 120 folks came together at the Avery Ranch Country Club in Austin, Texas to swing for a great cause, bid on silent auction items and enjoy a Texas-style barbecue on June 7, 2007. The First Annual ‘Chella Classic Golf Tournament benefiting IHRF, was organized by Jacque and Ron Tate of Austin, in honor of their daughter Michelle, who has chronic IH.
Several families in Texas affected by chronic IH volunteered and participated in the tournament. The event raised more than $30,000 for IH research. Special thanks to the Tate family and the many volunteers who helped to make the ‘Chella Classic such a fantastic day!
Los Angeles Times Article Profiles A Mother’s Efforts to Raise Awareness of Chronic IH
August 22, 2007
By Amanda Covarrubias
(Editor’s Note: This story originally appeared in the Los Angeles Times.)
Musicians put together concerts to benefit research for incurable brain disorder.
Dori Harrison-Clements hesitated to call anyone for help, but she was desperate.
She had no job. One of her two sons suffered from an incurable medical disorder. And she could not think of what to do to make things better. Then a birthday party chat changed her thinking. Perhaps her old friends from high school—even if they had not seen her in nearly 30 years—might care enough, might remember some fun times, might open their hearts to lend a hand.
Harrison-Clements, encouraged by friend Kevin Wachs, began dialing. Wachs suggested she organize a fundraiser with their rock music pals from the old days.
“All I know is I told the truth,” she said. “And I told it with love.”
To her delight, Harrison-Clements found that her message of despair reached her old friends. They valued the bonds they had created as teenage music lovers in the San Fernando Valley. They shared curiosity about the ailment afflicting her son. They felt compassion for her. And, to her astonishment, they immediately felt eager to do something special to help.
The friends launched themselves on a volunteer journey that has raised several thousand dollars for a nonprofit group called the Intracranial Hypertension Research Foundation. The friends—as members of several bands—performed at B.B. King’s Blues Club and Restaurant in Universal City last year and the Sagebrush Cantina in Calabasas in July.
“We get asked to be involved in charitable events over and over again,” said Steve Ogg, lead singer for Captain Cardiac and the Coroners. “But there were two things about this that made us want to participate: An old friend of ours was involved, and Dori made it very personalized.” Harrison-Clements, 49, thinks the emotional pain of a mother witnessing her child’s trauma came through in her pleas for help.
Her son Robbie Clements, 17, has suffered excruciating headaches triggered by intracranial hypertension ever since a garage door hit him on the head in 2002 at their former home in Morro Bay. To read more, please click here