Welcome to the Hydrocephalus Association website and to our hydrocephalus community. We hope that the information and support you find here will be of help.
From The BlogMedical Alert IDs and Hydrocephalus
By Jennifer Bechard, Support Group Liaison
Why are Medical Alert ID’s Valuable for People with Hydrocephalus?
We asked our Facebook page: “Do you use a medical alert card/bracelet for your shunt or Endoscopic Third Ventriculostomy (ETV)? If YES, tell us, what kind do you use and what information do you put on it?” We received some excellent feedback from parents, caregivers and individuals living with hydrocephalus. Many utilize several forms of medical IDs, however, there were many individuals who were not aware that something like this is available or the importance of it. (more…)
Looking Back…Moving Forward: Houston, We Have Lift Off!
As we continue our interview series commemorating our 30th anniversary, this week Randi Corey, our National Director of Special Events & Volunteer Support, sits down with our Houston WALK Co-Chair, Margaret Powers. Margaret chaired last year’s inaugural Houston WALK – without the assistance of a Co-Chair! The event was tremendously successful. Despite a deluge, this first-year event raised over $23,000 from more than 300 participants. In our interview, Margaret shares her thoughts about the Hydrocephalus Association and starting and coordinating a WALK. (more…)
HCRN Adds Centers in Vancouver and Tennessee
This announcement is reprinted with permission from the Hydrocephalus Clinical Research Network (HCRN) blog.
By John R.W. Kestle, MD, MSc, FRCSC, FACS
With recent moves of HCRN investigators Dr. John Wellons to Vanderbilt University and Dr. John Kestle to University of British Columbia, HCRN has decided to expand its network from seven to nine centers to incorporate their respective hospitals in HCRN research. Each center will begin its trial period immediately which involves adding patients to the HCRN registry as well as participating in the HCRN Quality Improvement Study for post surgical infections. Dr. Kestle will continue in his role as Chairman of HCRN and Dr. Wellons will continue to be the lead PI on the Study of Post Hemorrhagic Hydrocephalus which is nearing the completion of its accrual of patients.
HA Established Investigator Publishes Research Findings on Congenital Hydrocephalus
by Ashly Westrick, Research Programs Manager
James P. (Pat) McAllister, Ph.D., is the Director of Basic Hydrocephalus Research at the University of Utah. In 2011, he received a two-year Established Investigator grant from the Hydrocephalus Association. The journal article, The role of the subcommissural organ in the pathogenesis of congenital hydrocephalus, recently published in Cell Tissue Research, details his research findings. (more…)
A Million Reasons Strong
Hydrocephalus in the News
- China Working Toward a Spina Bifida and Hydrocephalus Network
- Two Canadian Rockers Tour Europe to Raise Awareness for Hydrocephalus
- The Saturday Evening Post Spotlights Normal Pressure Hydrocephalus
- Michigan Siblings Undergo Brain Surgery for Chiari Malformation
- Father Opens Up A World of Adventures for His Daughter