network

HA Partners with HCRN to Promote Groundbreaking Clinical Research

By Dawn Mancuso, FASAE, CAE, Hydrocephalus Association CEO I am pleased to announce that the Hydrocephalus Association (HA) and the Hydrocephalus Clinical Research Network (HCRN) have signed a partnership agreement that will ensure the continuation of HCRN’s hydrocephalus research. We are honored to be partnered with the first and, so far, only clinical research network […]

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New HCRN Study Up and Running

By John Kestle, MD, MSc, FRCSC, FACS (re-posted with the author’s permission) The HCRN has successfully launched a new, potentially ground-breaking study across the Network. This study, titled Ventricular Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus, or VINOH for short, is funded by a Mentored Young Investigator award from the Hydrocephalus Association received by Dr. […]

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There are a Million Hydrocephalus Stories; This is the Story of Tracy

Head Above Water By Tracy Taback Today, I am a healthy 31-year-old woman who just happened to be born with hydrocephalus (water on the brain). My condition lay dormant and went undetected for 23 years until one morning I woke up and drove to work but was unable to get out of my car when […]

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Wonderful Resource for Parents of Kids Living with Hydrocephalus.

PACER Center is the most fabulous resource!  It is a parent training and information center for families of children and youth with all disabilities from birth through 21 years old. Located in Minneapolis, it serves families across the nation.  Parents can find publications, workshops, and other resources to help make decisions about education, vocational training, […]

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A Day of Hydrocephalus Support, Education and Fun at the Oakland’s Children’s Hospital

Last month we were excited to take part in the local Oakland Children’s Hospital hydrocephalus festival in California. Each year, Sue Ditmyer, RN, CNP and her medical team organize a daylong event for patients and their families affected by hydrocephalus.     This year’s event featured a visit from the local Oakland Zoo! In addition […]

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American Idol’s Jennifer Lopez sheds a tear for hydrocephalus

Jennifer Lopez (J-Lo) tears up when American Idol hopeful, Paris Tassin, sings Carrie Underwood’s hit song “Temporary Home”. Paris dedicates the song to her beautiful daughter who was born with hydrocephalus and talks about how she is the best thing that’s happened to her. “When you sang, I really felt it … I knew [the […]

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Teens Take Charge – Olivia’s Story

My name is Olivia, I’m 14 and have been living with hydrocephalus since birth. I was born at only 29 weeks, which caused a bilateral grade II intra-ventricular hemorrhages (also known as brain bleeds), which developed post hemorrhagic hydrocephalus (excess spinal fluid in the brain). I underwent surgery to receive my first VP shunt at 10 […]

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Pittsburgh and St. Louis children’s hospitals join HCRN

by Paul Gross Our partners at HCRN have just made a big announcement — that they are adding two new pediatric centers to their network. The network now includes Toronto’s SickKids, Pittsburgh’s Children’s Hospital of Pittsburgh, Birmingham’s Children’s Hospital of Alabama, Houston’s Texas Children’s Hospital, St. Louis is Children’s Hospital, Utah’s primary Children’s Hospital and […]

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