hydrocephalus

Hydrocephalus Clinical Research Network – Making Waves

The Hydrocephalus Clinical Research Network (HCRN) study on Shunt Protocols, headed by Dr. John Kestle, is making waves in the neurosurgical community.  Published in the Journal of Neurosurgery this month, it is an important paper that has already been made available to the public. Click here to read the full article. Also, Dr. Kestle was […]

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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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HYDROCEPHALUS WALK TIP OF THE MONTH– July 2011

Hydrocephalus Association Virtual WALK Program by Randi Corey, HA Director of Special Events Announcing the Hydrocephalus Association’s (HA) Virtual WALK and virtual walker programs! No HA WALK in your area yet?  But you’d still like to participate (walk, raise money, be eligible for prizes) in a HA WALK?  Join HA’s “Virtual WALK site!”  HA is […]

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Make a Difference in Congress for Hydrocephalus Research – A CALL TO ACTION

We need your help to make sure your Representative in Washington, DC knows how important it is to expand research for hydrocephalus.  The Hydrocephalus Association has identified four key Congressmen who help decide how the federal government funds research into new treatments for diseases such as hydrocephalus. Congress is making decisions now on how to […]

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Update on Pre-Existing Condition Insurance Plans

The following information was kindly brought to our attention by the National Health Council (NHC) and Janet Miller, MPA on behalf of the Centers for Medicare & Medicaid Services. As you know, the Affordable Care Act (ACA) created the Pre-Existing Condition Insurance Plan (PCIP), which will offer health insurance coverage for people with chronic conditions […]

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NIH NINDS Forum Provides Insight into Hydrocephalus Funding

By Paul Gross, Chairman of the Board I attended the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) nonprofit forum on June 1st.  Of the 27 institutes that make up NIH, NINDS is the largest potential grantor in hydrocephalus research.  The event is put on by the NINDS staff to […]

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HCRN – Moving the Dials on Hydrocephalus Treatment

The Hydrocephalus Clinical Research Network (HCRN) is publishing a paper in the Journal of Neurosurgery.  This paper is about their program to standardize treatment of hydrocephalus in all of their centers and showed a significant drop in post-surgery infection rates. We would like to extend our congratulations and heartfelt thanks to the HCRN and the […]

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HA Announces RFA for New Round of Research

The Hydrocephalus Association (HA) is pleased to announce the release of the Request for Application (RFA) for its upcoming round of hydrocephalus research awards. In 2010 and 2011, the Association granted funds totaling over $750,000 in Mentored Young Investigator Awards in order to stimulate hydrocephalus research and a research infrastructure. This new and exciting round […]

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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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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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Educating the Media about Hydrocephalus

Rick Smith, Acting Chief Executive Officer We recently heard from someone with a complaint about her local newspaper – the paper had printed inaccurate information about hydrocephalus as part of the Congresswoman Giffords story. We responded to her with the suggestion that she should write a letter to the editor with the correct information to […]

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Congresswoman Gabrielle Giffords received a permanent shunt for her hydrocephalus Wednesday, May 18th

Arizona congresswoman Gabrielle Giffords, who was shot in the head more than four months ago in Tucson, Ariz., had a permanent ventriculoperitoneal (VP) shunt inserted for hydrocephalus. Rep. Gabrielle Giffords is recovering well after her two brain surgeries yesterday.  Neurosurgeons also placed a bone flap to protect her brain and skull.  This operation, known as […]

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Workplace Communication Tips for People Living with Disabilities

by Dave Carl, job coach and guest blogger My primary focus as a social worker is working with individuals living with disabilities teaching a variety of independent living skills including employment. Through my career I have seen the progress of people living with disabilities in the workforce who at first had very low self-confidence and […]

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Dr. Salomon Hakim – a Giant in the Field of Hydrocephalus

by Marvin Sussman, Ph.D., HA Board Member and Pip Marks, Director of Support and Education Respected Colombian neurosurgeon Salomon Hakim, MD, PhD, who worked extensively in the field of hydrocephalus, has died at the age of 88. Dr. Hakim passed away in a Bogota hospital in the early hours of Thursday morning, May 5, due […]

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Hydrocephalus on ABC’s Grey’s Anatomy — CALL TO ACTION

Last night, (5/5/2011), ABC’s Grey’s Anatomy featured hydrocephalus for the second time in the show’s history.  The first time was in November of 2009 and involved Normal Pressure Hydrocephalus, which affects older adults.  In last night’s episode ‘White Wedding’, Derek Shepherd (Patrick Dempsey) and Meredith Grey (Ellen Pompeo), adopted a baby from Africa with hydrocephalus. […]

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Defining Research Terms

What do the terms “Basic”, “Clinical” and “Translational” mean when used to describe biomedical research studies? By Donna Schaffer, HA Research Associate In the field of biomedical research the terms “basic research” and “clinical research” are often used to distinguish between two different approaches to studying the causes and treatment of disease.  Simply stated, in […]

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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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Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

By Jenna Ellis, Co-Chair of HA’s Detroit, MI WALK In the past, (hydrocephalus) WALK Chairs have gotten to know each other through emails and brief encounters at conferences. There was always a feeling that more time was needed to talk about WALK.  This year veteran WALK Chairs from all over the United States gathered in […]

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NPH, a Gaited Community

There are three characteristic symptoms that help define Normal Pressure Hydrocephalus (NPH).  They are urinary incontinence or frequency, mild dementia and gait difficulties.  Also known as wet, wacky and wobbly.  Of these three, gait tends to be the most noticeable and is very often the gateway to a final and successful diagnosis as the small, […]

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HYDROCEPHALUS WALK TIP OF THE MONTH – April 2011

HA WALKs and Family Teams! by Randi Corey, HA Director of Special Events Currently the Hydrocephalus Association (HA) has 30+ WALK sites across the country and many of them are comprised primarily of Family Teams — Hydrocephalus Association’s Family Teams are vital to the success (and growth) of our WALKs! What is a Family Team? […]

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HCRN Holds Semi-Annual Meeting

The Hydrocephalus Clinical Research Network (HCRN) recently held a successful two-day meeting in Birmingham, Alabama.  They discussed new research strategies and provided updates on their current research projects. Of particular note were negotiating procedures for enrollment in a study into “best care” for neonatal patients with intraventricular hemorrhage as well as a study launched with […]

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Hydrocephalus Association Board Member Named Chief Operating Officer of the Feinberg School of Medicine at Northwestern University

Congratulations to David Browdy of Oak Park, Illinois—yesterday he was promoted to Chief Operating Officer (COO) of Northwestern University’s Feinberg School of Medicine.  Northwestern’s Feinberg School of Medicine is a leading, research-intensive medical school located in Chicago, Illinois.   Among other things, Mr. Browdy is a reviewer for the National Institutes of Health National Center […]

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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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Hydrocephalus Association Makes the Grade…again

By Rick Smith, Acting CEO, Hydrocephalus Association I’m pleased and proud to forward some great news for the Hydrocephalus Association, and its many volunteers and donors: the National Health Council (NHC), the nation’s largest association of national health related organizations, has renewed HA’s Certification for Charitable Accountability. The NHC requires all of its member organizations […]

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Hydrocephalus Association Makes the Grade…again2

By Rick Smith, Acting CEO, Hydrocephalus Association I’m pleased and proud to forward some great news for the Hydrocephalus Association, and its many volunteers and donors: the National Health Council (NHC), the nation’s largest association of national health related organizations, has renewed HA’s Certification for Charitable Accountability. The NHC requires all of its member organizations […]

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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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ASAP Conference Registration is Open

Chiari Malformation and Syringomyelia are two conditions frequently associated with hydrocephalus.  As it has always been our policy to keep our community up to date on anything that might affect or be of interest to them we would like to make you aware that the American Syringomyelia & Chiari Alliance Project (ASAP) will be holding […]

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A Most Unusual Christmas Party

by Jilinda Richer, long-time HA member and featured guest blogger When I met Leanne Lintula, Senior Product Manager, of Medtronic‘s Hydrocephalus Division at the Hydrocephalus Association Conference in Cleveland last summer, we chatted for a few minutes, and she gave me her business card, which I tossed onto a small table in our bedroom and […]

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Hydrocephalus Snowshoe WALK a Hit

by Christian Karch The Inaugural Hydrocephalus Association Snowshoe WALK on March 12 in Steamboat Springs, Colorado was a great success! The WALK brought together the hydrocephalus community and generated quite a bit of media exposure, raising awareness through excellent media coverage including live TV, a live radio interview, and a front page article in the […]

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HCRN Developing New Study, Could Lead to New Test for Hydrocephalus

Dr. Dave Limbrick, MD, PhD, a neurosurgeon from St. Louis Children’s Hospital — a new member of the Hydrocephalus Clinical Research Network (HCRN) — is conducting a study that seeks to identify bio-markers for hydrocephalus. The study is in its early stages, and you can read more about it, along with other HCRN news, here.

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New Hydrocephalus WALK Chair’s Training Meeting – A Study in Dedication and Commitment

By Randi Corey, HA Director of Special Events On Saturday, Feb. 26th at 8:30 am, I stood looking across the room and saw 13 volunteers of all ages, ethnicities, and backgrounds looking back at me expectantly. They had come from cities all across the nation to be here.  Many of them overcoming airline delays and […]

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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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Hydrocephalus Snowshoe Event Makes Local Paper

The Inaugural Snowshoe Event in Steamboat Springs, CO was featured in the latest edition of Steamboat Today.  It’s an excellent piece that talks about hydrocephalus, the state of research and treatment and features the event organizer Christian Karch, his wife Laura and daughter Sofia who is living with hydrocephalus. Click here to read the article. […]

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Tax Act Brings Changes to SSI / Medicaid Treatment of Refunds, Tax Credits

(the following may be of interest to persons living with hydrocephalus who receive SSI benefits) Several little-noticed provisions of the recently-enacted law that extended the Bush-era tax cuts fundamentally alter how the Supplemental Security Income (SSI) and Medicaid programs treat tax refunds and other tax credits, making it easier for people with special needs to […]

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2012 Conference on Hydrocephalus, ‘Save the Date!’

by Pip Marks and Karima Roumila We are most excited to announce our 12th National Conference on Hydrocephalus which will take place in Bethesda, MD on June 27th – July 1st 2012! The goal of our biennial conferences is to give individuals, families and professionals the tools and connections they need to address the medical, […]

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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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HYDROCEPHALUS WALK TIP OF THE MONTH – February 2011

Launching a new WALK! by Randi Corey, HA Director of Special Events Although most HA WALKs are scheduled for the fall, in more than 30 cities across the nation HA volunteer Chairs are hard at work, getting their WALKs underway! (All HA WALKs are totally volunteer initiated and coordinated – our volunteer Chairs are HA’s […]

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Hydrocephalus Advocacy – Make Your Voice Heard

by Karima Roumila, MPH The Hydrocephalus Association would like to make hydrocephalus more known in Congress. Let’s educate our policy makers about hydrocephalus and let them know that constituents in their districts are affected by the condition and more research funding is needed. Contact Your Legislator for Hydrocephalus As a constituent, your lawmakers and political […]

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