IHRF

October 5, 2011- IHRF’s co-founder, Emanuel Tanne, M.D. and three of its Scientific Advisors—Conrad Johanson, Ph.D., Steven Katz, M.D and Michael Williams, M.D.— were appointed earlier this year to a special group of researchers and clinicians at NASA dealing with the problem of microgravity-induced intracranial hypertension and papilledema that some astronauts develop after arriving in space. IHRF has been a consultant to NASA since 2003, a role that has included clinical trial testing of non-invasive pressure monitoring technology developed by the space agency.

A widely published study by NASA in recent weeks has focused public attention on the problem for the first time. Intracranial hypertension in astronauts is thought to be caused by a fluid shift in the body upon reaching microgravity. One concern is the development of papilledema and vision difficulties or loss during a mission.

In the NASA study, researchers investigated the issue and the potential vision impairment that does not always reverse on returning to Earth. According to a NASA spokesman, approximately 35 percent of its former space station crew members, who typically spend about six months in orbit, experience visual acuity issues. Another concern is the length of time in space and whether that affects the development or progression of vision issues.

In February 2011, IHRF attended a NASA conference in Houston, Texas that was held to plan and design research projects involving microgravity-induced IH and papilledema, and the discovery of the disorder’s origins. 

The IH Registry, with its Neuroimaging Library and donor program, is of particular interest to NASA since it remains the largest collection of medical data on chronic IH patients in the world and a vital research tool to help answer questions about the disorder’s pathogenesis, development and how it might be prevented. It may also provide clues as to why some astronauts develop microgravity-induced intracranial hypertension and papilledema. Enrolled and confirmed IH Registry patients may, if qualified, have an opportunity to participate in research studies, as well.

IHRF is committed to moving IH research forward and to finding better, more effective treatments and a cure. The opportunity to continue working with NASA toward the significant goal of understanding and preventing IH, stands to improve the lives of IH patients everywhere. The Foundation is pleased to be part of this effort to help our country and all who are affected by IH.

The complete NASA study will be reviewed in our next In Sight newsletter.

September 2011—The Intracranial Hypertension Research Foundation is among the 214 members of the Ad Hoc Group for Medical Research— a coalition of patient and voluntary health groups, medical and scientific societies, academic and research organizations— which have strongly urged Congress to prioritize critical funding for the National Institutes of Health (NIH) in 2012.

In an August 9, 2011 letter from the Ad Hoc Group for Medical Research to Representatives Dennis Rehberg and Rosa DeLauro, the Chair and Ranking Member of the Labor-HHS-Education Subcommittee of the House Appropriations Committee, the group asked that NIH be recognized as a critical national priority in the FY 2012 Labor-HHS-Education Appropriations bill. The letter calls attention to the fact that “the foundation of scientific knowledge built through NIH-funded research across the country drives medical innovation that improves health and quality of life.”  It also notes the economic benefits of medical research and the importance of progress on previous investments in research, the ability to recruit and train new scientists and researchers; and maintain leadership in global scientific innovation.

The letter can be viewed at:https://www.aamc.org/download/256792/data/groupletteronfy2012nihfundingtohouselabor-hhseducationsubcommit.pdf

On September 2, 2011, IHRF also joined with the Coalition of Health Funding and the Committee for Education, as one of 532 organizations that included disability, public health, medical research, patient advocacy groups and organizations, which sent a letter to the Appropriations Committee to strongly support health, education, children’s and social services as critical national funding priorities for 2012. The letter noted that “additional investment in these domestic programs will boost the economy and reduce the deficit through the prevention of chronic diseases, increased earnings, and reduced expenditures for unemployment and other social service programs.”

A vote on the 2012 Labor-HHS-Education Appropriations bill is expected in the near future. 

Update
On September 21, 2011, the Senate Appropriations Committee approved FY 2012 Labor-HHS-Education spending bill by a party line vote of 16 to 14. The bill provides $30.5 billion for the National Institutes of Health (NIH), a decrease of $190 million (0.6 percent) from the FY 2011 level.  The committee rejected, 16 to 14, an amendment by Senator Jerry Moran (R-Kan.) that would have restored the $190 million cut. The offset for the amendment was an across-the-board cut of all other programs in the bill.

The bill provides $20 million for the Cures Acceleration Network (CAN) at NIH, which activates its authorization.  According to a summary released by the committee, “The bill creates the National Center for Advancing Translational Sciences (NCATS) as part of a broader restructuring at NIH that also includes the termination of the National Center for Research Resources.”

Meanwhile, the House on September 21 rejected the FY 2012 continuing resolution (H.J.Res. 79), 195 to 230.

(From the American Brain Coalition)

Intracranial hypertension (IH) is an invisible disorder; people with IH often look fine, on the outside, but are, in fact, suffering terribly. It also is an illness that can strike anyone. The Foundation originally created the Wall of Hope on IHRF’s Facebook page as part of the effort to raise public awareness of intracranial hypertension for Rare Disease Day. It proved so popular that we are is once again opening the Wall of Hope for your pictures during IH Awareness Month (September 2011). Please join this grass-roots campaign to literally give IH a face—yours!

Are you on Facebook?
For the month of September, we are asking you to take a picture of yourself and add these additional words:

I am the face of intracranial hypertension (IH).
IH Awareness Month, September 2011
http://www.ihrfoundation.org

If you are a friend or family member of someone with IH, you can use the following:

My (family member/friend) has intracranial hypertension (IH).
IH Awareness Month, September 2011
http://www.ihrfoundation.org

After you take the picture, please send your photo by Facebook message or to .(JavaScript must be enabled to view this email address) to volunteer Dori Harrison Clements. Dori and volunteer Brooke Pettigrew will be posting the photos to our page, so we can create a Wall of Hope album. We also hope that you will use it for your profile photo during September as way to continue to spread awareness.

Thanks for your help in raising awareness of IH and IH Awareness Month!

Please note: IHRF reserves the right to select or reject any picture submitted to the Wall of Hope. To be considered for the Wall of Hope, pictures must include the following information: “I am the face of intracranial hypertension. IH Awareness Month, September 2011. http://www.ihrfoundation.org”  Pictures with any other information will not be accepted. When you submit a picture to the Wall of Hope, you grant IHRF permission to use your Wall of Hope photo in any Foundation-related marketing, educational or fundraising campaign or material.

Thank you to all of those who attended the 2011 IHRF Patient Conference at Nationwide Children’s Hospital in Columbus, Ohio on August 13-14, 2011. It was extraordinary weekend of learning and connection; we enjoyed meeting you! We are especially grateful to our hosts, Nationwide Children’s Hospital; to Medtronic, for their generous support of this event; to our super volunteers, as well as to each of the Conference presenters, for their time, knowledge, dedication, and compassion. Thank you all!

We’ve posted some more pictures from the 2011 IHRF Patient Conference on our Facebook page. Please feel free to check them out!

General Information
The 2011 IHRF Patient Conference will take place at Nationwide Children’s Hospital in downtown Columbus, Ohio on Saturday, August 13 and Sunday, August 14, 2011.
Getting There
Columbus has two major airports. Port Columbus International Airport is located just 10 minutes east of downtown, which is serviced by all the major air carriers,  Taxi service is provided by many vendors. The average fare from Port Columbus International Airport to downtown is $18-$20. Airport shuttles also are available

Rickenbacker International Airport, located 20 miles southeast of downtown Columbus, is the site of an international multi-modal cargo complex, a high-speed logistics hub and a charter passenger terminal. Maps of direct flights to Columbus, as well as flying/driving times from major cities are available at http://www.columbus.gov/experience_columbus.aspx?http://www.experiencecolumbus.com/get-here.cfm

The conference will be held at the education center at Nationwide Children’s Hospital main campus in Columbus. The main entrance is located at 700 Chldren’s Drive.The parking lot closest to the education center is the visitor parking garage located at 18th Street and Mooberry Street. (Parking is $2.00)

Driving directions to Nationwide Children’s Hospital: http://www.nationwidechildrens.org/main-campus-map
More parking information: http://www.nationwidechildrens.org/hospital-parking

Accommodations
We have arranged to have a block of rooms held at the Columbus Renaissance hotel in the downtown area, close to the hospital.The Renaissance is offering a special rate for the conference, but you must mention that you are attending the IHRF Patient Conference to receive it.

The Columbus Renaissance Hotel
50 N.3rd Street
Columbus, Ohio 43215
1-800-266-9432
614-228-5050 (local)
https://resweb.passkey.com/Resweb.do?mode=welcome_ei_new&eventID=3421008

Rate for IHRF Conference: $99/night
To receive this rate, you must make sure to mention that you will be attending the IHRF Patient Conference.(Or you can use the direct link listed above.)Rooms at the Renaissance for the Conference will be held until July 28, 2011.

o 100% non-smoking
o Rooftop pool and fitness center
o Wireless high-speed Internet access available
o Latitude 41 restaurant and bar
o Parking available

Note: We will be providing shuttle service to the Conference for attendees staying at the Renaissance without cars or those who prefer not to drive.

Shaler Woman Battles Rare Disease

By Bethany Hofstetter
September 16, 2010

(Editor’s note: This article originally appeared in the Pine Creek Journal/Pittsburgh Tribune Review

Every day Cindy Urso wakes up with a migraine-strength headache.

When the headaches aren’t completely debilitating and she is able to climb out of bed, she goes directly to the medicine cabinet.

“I have bottles of prescriptions, I feel like it’s breakfast, lunch and dinner,” said Urso, 41, of Shaler.

Urso is one of about 25,000 people in the United States struggling with Intracranial Hypertension (IH), a rare disease in which the spinal fluid pressure in the skull is too high causing severe headaches, vision loss or blindness from swollen optic nerves and numerous additional symptoms. Urso was diagnosed with IH in January 2009 after being plagued with unexplainable headaches.

In the past year, Urso has had seven surgeries to insert various types of shunts to try to relieve some of the spinal fluid pressure. However, the pressure still spikes landing Urso in the hospital almost every other month for a week at a time to correct the problem.

“I really, truly hope someday—for the time-being—for a medicine that can get us through the day comfortably and in the future, a cure,” Urso says.

The Intracranial Hypertension Research Foundation, based out of Vancouver, Wash., is the only nonprofit organization in the world devoted to supporting medical research of chronic IH, according to its website. Currently the IHRF is working to compile a global registry of individuals with an IH diagnosis and a neuro-imaging library of IH patients’ brain scans for scientists to research possible commonalities.

“There’s so little (research) going on and the need for it is so great,” says Jessica Tanne, of the IHRF.

In 2007, it’s estimated that the economic impact of confirmed IH cases was $444 million. That number would be higher, except there is no diagnostic code for secondary IH—cases of IH caused from another medical issue.

“There really needs to be a better solution, a lot of people are suffering,” Tanne says. “We really need people to know about this disorder and the effect it’s having on people and their lives.”

Life Before IH

Urso had an active life before IH. She was a teacher’s aide at Marzolf Primary, shuttled her children to and from after-school activities and cared for their special needs. Urso’s daughter, Ashley, 20, has Down syndrome, and her son, Jan, 14, has Asperger’s syndrome.

“For all these years, I’m so used to helping them, it’s sort of like the roles are reversed,” Urso says.

Urso’s husband, Jan, now is the sole breadwinner and takes overtime when he can, and the children have increased their responsibilities.

“I help her with everything—laundry, cooking, cleaning, feeding pets,” Ashley says.

Ashley says her mother is “strong and brave” to live with IH, but she misses the days of her mom taking her to cheerleading practice or spending a “girls day” out shopping together.

“Before she got IH, we had so much fun together,” Ashley said. “Now it’s been always a lazy day at home.”

Urso says IH is “a lonely disease” because so little is known about it and patients don’t “look sick.” During very difficult times, Urso turns to the Internet for support from others who are living with the disease. “If you have a really bad day, you don’t want to keep laying that all on your family,” she says.

Urso even made contact with another person from Pittsburgh who is living with IH. The two hope one day to be well enough at the same time to meet. Urso’s family continues to be her biggest support system and gives her the courage and determination to face IH everyday.

During September, IH Awareness month, she hopes to make others aware of the rare disease and how it affects others.

“I hope people realize not to take their health for granted,” Urso says. “I don’t want people to feel sorry for me or pity me, but know that there are rare diseases out there and to know there are people out there walking around struggling.”