One Rare Brain Condition Will Unite Hundreds in Downtown Portland

Dr. Nathan R. Selden of Oregon Health and Science University hosts the 13th National Conference on Hydrocephalus, July 9-11, 2014, sponsored by the Hydrocephalus Association.

Bethesda, MD | April 16, 2014

Leading medical professionals, researchers, patients and their families will gather in downtown Portland for the 13th National Conference on Hydrocephalus, hosted by the Hydrocephalus Association (HA). The biennial conference provides tools and personal connections to address the medical, educational and social challenges of living with hydrocephalus, a chronic condition for which there is no cure.

“Hydrocephalus is a complex disease that requires interdisciplinary, patient-focused care,” states Dr. Selden, Medical Co-Chair for the conference. “By bringing the Hydrocephalus Association meeting to Portland, we will gain an enormous opportunity to connect families, patients, doctors and other caregivers, helping individual families and advancing our understanding of this disease process.”
Hydrocephalus is a condition in which cerebrospinal fluid accumulates in the brain. The only treatment requires brain surgery. The prevalent treatment is the implantation of a shunt, a medical device developed over 50 years ago that has a high failure rate, relegating patients to a lifetime of brain surgery. For the conference participants, the conference is an opportunity to connect with peers who understand what it means to live with this uncertainty as well as some of the challenges that can accompany with the condition. These can include daily headaches, learning disabilities in children, and other medical conditions such as seizures and vision issues, to name a few. In addition to networking and supporting each other, participants spend three days mixing with leading medical professionals, including neurologists, neurosurgeons, neuropsychologists, nurses, educational consultants, and an array of other specialists.

“What makes our conference unique is that we bring patients and caregivers, medical professionals, and medical industry representatives together in a casual environment that facilitates information-sharing, support, and community. There are no barriers or segmentation. A neurosurgeon can be seen eating lunch with 4 or 5 families. A neuropsychologist and a mother of a patient can be leading a workshop session together,” explains Karima Roumila, the Hydrocephalus Association’s Director of Education and Support.

There are 1 million Americans living with hydrocephalus in the U.S., yet it remains a little known condition. Anyone can get hydrocephalus. One to two of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors. Additionally, people of any age can acquire hydrocephalus at any stage of life due to brain hemorrhage, infection, tumors, trauma, or, for unknown reasons, through the aging process. Normal Pressure Hydrocephalus (NPH), which primarily affects the senior population, is often undiagnosed or misdiagnosed as Alzheimer’s or Parkinson’s disease.

The conference will be held at the DoubleTree by Hilton Portland, 1000 NE Multnomah Street, Portland, OR 97232. The conference will begin mid-afternoon on Wednesday, July 9, and conclude by 10:00 pm on Friday, July 11, 2014. We invite you to join us! To learn more about the conference and to register, please visit or contact the Hydrocephalus Association at (888) 598-3789.

About the Hydrocephalus Association
The Hydrocephalus Association (HA) is a charitable organization dedicated to eliminating the challenges of hydrocephalus by stimulating research and supporting people who are affected by this condition. Incorporated as a non-profit in 1986, HA is now the nation’s largest and most widely respected organization dedicated solely to serving those affected by hydrocephalus. HA has been instrumental in creating a community of individuals, families and health care professionals addressing the complexities of hydrocephalus in all age groups.

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