Parent Blog

New Addition to the Hydrocephalus Book Club

By Jordan Faigen HA would like to welcome ‘Just Like Any Other Little Beagle’ as the newest addition to our hydrocephalus resources. This coloring book, distributed by the shunt company Integra Life Sciences, is a great tool to teach children about the condition through a family friendly tale and interactive illustrations. Come follow young Barney […]

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Imagine No Hydrocephalus

by Rick Smith, HA Acting CEO As we put the final touches on our five year Research Initiative Plan, we wanted to find an additional way to convey our hope for the impact of increased hydrocephalus research. We were going to release this video with the plan but because September is National Hydrocephalus Awareness month, […]

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Meet Boozle Bear, A Wonderful Educational Tool

By Lisa Sun, HA Administrative and Program Assistant Our Boozle bear, who has hydrocephalus, was created by Dory Kranz and Sarah Zadorozynj. Boozle is used by doctors, nurses and parents to teach children about hydrocephalus and how shunting works. Boozle comes with a detachable ventriculo-peritoneal (VP) shunt which is donated by Codman. Anyone can learn […]

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Talking to your Doctor

We asked on our Hydrocephalus Facebook community page: “Do you prepare a list of questions to ask your or your child’s doctor before the appointment?” We were so pleased to see the majority of our community members answered “yes” to last week’s Facebook poll question, as it is very critical to be prepared before a […]

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Announcing the 2011 Hydrocephalus Association Scholarship Awardees

We are so pleased and humbled to announce the 2011 Hydrocephalus Association Scholarship Awards recipients. The scholarships program marks its 17th year and we are very proud to honor these amazing young adults. Despite the challenges and obstacles, these future young leaders of our community are able to further their education, help their community and […]

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

by HA Member Susan Andersen Moore Our daughter Hannah has a programmable VP shunt for her hydrocephalus. Here is a little of her story. Hannah was born sometime in May of 2002. She was abandoned at 4 months of age on the footsteps of the Social Welfare Institute in Luohe City China. She was terribly […]

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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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Our Hydrocephalus Resource Library is growing like a tree in well tilled soil!

By Pip Marks, HA Director of Support & Education Every week new published articles related to hydrocephalus are being added to our Hydrocephalus Resource Library.  For example, check out this very interesting, new paper authored by Dr. Leland Albright “Hydrocephalus shunt practice of experienced pediatric neurosurgeons”. This study evaluates the different ways eight extremely experienced […]

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Traveling with Hydrocephalus

We asked on our Facebook Fan page: “If you are planning to travel this summer have you inquired about neurosurgeons in the area you are visiting, in case of an emergency?” Here is what you said: After looking at the results, we had asked Debby Buffa, Hydrocephalus Association Board Member, mother of two young adults […]

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Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

by Pip Marks, HA Director of Support and Education Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of your medical records including images (CT scans and MRIs) is good advice for any person receiving medical attention. For those who have hydrocephalus or other chronic conditions, it is […]

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Hydrocephalus Resource Library: Shunt Taps for Shunt Malfunction in Hydrocephalus

Each week we will feature an article from our Hydrocephalus Resource Library. Since shunts are the mainstay treatment for hydrocephalus, we will begin with an interesting paper regarding malfunction and taps. Shunt malfunction can often be difficult to diagnose. MRI and CT scans are commonly used, but ventricle size does not always change in people […]

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Neurodevelopment of Children and Teens with Hydrocephalus

By Jay Wellons, M.D. and David Nilsson, Ph.D. Article first appeared in Pathways, Fall edition 2008 From a developmental perspective, hydrocephalus, as with other forms of neurologic compromise, demonstrates its most prominent disruption to ongoing neurodevelopmental progression of the individual child. As such, many of the developmental consequences of childhood are less obvious, but as […]

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Brain Awareness Week: Part 2, Exploring Areas of the Brain Affected by Hydrocephalus

by Karima Roumila As a follow up to the previous article on the anatomy and physiology of the brain and of Brain Awareness Week activities, we would like to continue our learning and explore the terms we so often hear when dealing with hydrocephalus. These definitions are taken from our various educational publications, which are […]

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Brain Awareness Week: Pt. 1, The Anatomy & Physiology of the Brain

The Dana Alliance for Brain Initiative launched Brain Awareness Week (BAW) back in 1996. The Hydrocephalus Association proudly partners with the Dana Foundation for this global campaign to increase public awareness about the progress and benefits of brain research. This global coalition of BAW partners includes more than 2000 universities, K-12 schools, hospitals, patient groups, museums, […]

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Hydrocephalus and Your Vision

by Pip Marks, HA Director of Support and Education Changes in eye vision of any kind are critical to report as they may well be related to shunt failure/malfunction.  Consult with your doctor, neurosurgeon or ophthalmologist, immediately if you ever experience any kind of change in your vision: blurriness, gray outs, double vision, etc. Increased […]

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Announcing the 2011 Scholarships

Hydrocephalus Association 2011 Scholarship Applications Available We are so pleased to start this New Year by announcing the new cycle for Hydrocephalus Scholarships. The Hydrocephalus Association (HA) awards each year eight distinguished scholarships to eight capable and promising young adults who have been dealing with the complexities and challenges of hydrocephalus. Please click here for […]

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When Life Hands you Hydrocephalus…

By Sarah Oxford, Regional Program Manager Nine year old Alex Rodger is one of the youngest entrepreneurs I know. His mom, Eileen, organizes the South Florida Walk which will take place on Saturday, November 6th. Last year Alex decided he personally wanted to raise funds for “Team Alex”. So he opened a lemonade stand and […]

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Hydrocephalus…It’s a Real Headache

By Tom Smith, Adult Services & Outreach Coordinator Recently, we posed this question on Facebook ‘What does hydrocephalus mean to you?’ We received scores of answers, all of them great, many of them poignant. One of them was: “Headaches – and I wonder when they might be a serious problem.” Headaches have a very special […]

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You’re Not Alone

By Jennifer Bechard Imagine how a 10 year old would feel lying in a hospital bed not knowing what is going on or where to turn to for support. With too many questions and not enough answers, a condition such as hydrocephalus can take an emotional and physical toll on any individual, especially a child. […]

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Trust and Let Go

by Pip Marks The issue of transition is very close to my heart – it has been since the day my oldest child was born. My first questions to the docs after his birth were “Will he be able to live away from home one day? Will he be able to take care of himself? […]

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Announcing the 2010 Hydrocephalus Association Scholarship Awards

By Tom Smith The Hydrocephalus Association (HA) is both pleased and privileged to award eight scholarships to persons with hydrocephalus seeking higher education. Each year we receive dozens of application and as you might imagine, is is always difficult to choose among the many outstanding applicants. However, we are pleased to announce that these young […]

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When I Grow Up

By Michelle Emick Ronholm We all have childhood dreams and aspirations.  What kid hasn’t pretended to be ballet dancer, a gymnast, a doctor, a firefighter or a professional baseball player?  Sometimes those dreams become reality; often we evolve those dreams into fulfilling and happy lives.  What most kids don’t think about as they’re growing up […]

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