hydrocephalus research

Meet the Hydrocephalus Association’s New Research Associate

By Rick Smith, Acting CEO We are extremely pleased to have Gavin Reed join the Hydrocephalus Association staff as our Research Associate.  For the past two and a half years, Gavin has been a part of the pediatric neurosurgery research team at Children’s Hospital of Alabama in Birmingham. During that time, he helped evaluate treatments […]

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Advocacy Update: HA Points to Increased Funding but Calls for More

By Rick Smith, HA Acting CEO As a delegation from the Hydrocephalus Association heads to Washington D.C. to participate in the September 23rd Day of Testimony, we thought we would provide you with a complete update of our advocacy efforts. First, we have just completed an in-depth analysis of investments in hydrocephalus research by the […]

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HA Chairman Featured in Xconomy.com

by Tom Smith Paul Gross, HA’s Board Chairman and former Microsoft  senior executive, was asked to contribute a blog to Xconomy.com regarding his recent appointment to the National Institute of Neurological Disorders and Stroke (NINDS) advisory council. Paul tells his personal story about his involvement in the hydrocephalus struggle. He describes his journey as a […]

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HA Chairman, Paul Gross, Joins NINDS Advisory Council

By Rick Smith, HA Acting CEO I am pleased to announce that Paul Gross, Chairman of Hydrocephalus Association’s (HA) Board of Directors, has been selected to join the 18 member National Advisory Neurological Disorders and Stroke Council -the major advisory panel to the National Institute of Neurological Disorders and Stroke (NINDS).  Paul joins three other […]

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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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HA Sponsored Research Publishes Significant Discovery

Jerold Chun, MD, PhD, a professor at Scripps Research and its Dorris Neuroscience Center, has discovered a significant factor in the development of congenital hydrocephalus.  Chun describes the discovery as a proof of concept that could lead to medical treatments for hydrocephalus.  His finding involves the discovery of abnormally high levels of a lipid called […]

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Hydrocephalus Association WALK and Special Event Partner Profiles

The Hydrocephalus Association (HA) proudly introduces you to some of our outstanding volunteer leaders – the 2011 WALK and Special Event Chairs!  These men and women spend countless hours coordinating HA WALKs and special events in their communities.  They possess great leadership, passion and initiative which in turn allows HA to increase its investment in […]

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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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Recent NPH Research Update

There is a growing body of work surrounding Normal Pressure Hydrocephalus (NPH) that simultaneously moves us forward and illustrates how far there is to go.  Two recently published studies aim at establishing parameters of the effects of NPH specifically on cognition, and generally, on the effect that treatment can have on quality of life. The […]

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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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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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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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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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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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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 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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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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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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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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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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Team Hydro Takes Their Goggles to Chicago

On August 20th, 2011 Team Hydro will participate in the first annual Lake Michigan Sharkfest Swim in downtown Chicago. The team will race in memory of Kate Finlayson, who passed away in November of 2010 from complications related to her hydrocephalus. Funds raised from the team’s efforts support the Kate Finlayson Memorial Research Grant which […]

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2010 Hydrocephalus Association Resident’s Prize

2010 Resident’s Prize Awardee is Announced Every year, the Hydrocephalus Association awards a resident’s prize in neurology/neurosurgery to the most promising research paper relating to hydrocephalus.  The paper is presented at the Pediatric Section meeting of the American Association of Neurological Surgeons/Congress of Neurological Surgeons (AANS/CNS). The prize for 2010 went to Ramin Eskandari, MD, […]

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HYDROCEPHALUS WALK TIP OF THE MONTH – January 2011

The ABC’s of Corporate Sponsorship by Randi Corey, HA Director of Special Events The 2011 WALK season is already underway, which means that every Hydrocephalus Association WALK is actively seeking corporate sponsorship.  Where do you work?  Where does your spouse work?  Where do other family members (even extended family) work?  Because, that’s where you start […]

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Hydrocephalus Research Update – Announcing New Mentored Young Investigator Grants

“The Hydrocephalus Association is pleased to announce its Mentored Young Investigator research awardees for 2010.” Jay Riva-Cambrin, M.D., a pediatric neurosurgeon of the University of Utah and Primary Children’s Medical Center will lead a multi-center study across the Hydrocephalus Clinical Research Network (HCRN) study linking MRI to established and novel measures of neuropsychological outcomes in […]

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In Memory of Kate

On November 27, Kate Finlayson passed away due to complications from hydrocephalus and the many surgeries she endured to combat it.  She was, and remains, an inspiration for all of us dedicated to furthering the fight against hydrocephalus. Just 26 years old, Kate underwent more than 130 surgeries in an ongoing struggle to manage her […]

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Hydrocephalus WALK 2010 – Photos

Below are a small sample of pictures from our 2010 WALK season.  Once again, people from all across the country came together to create awareness of hydrocephalus and raise funds for research while having a great time.  Hence the smiles.

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Hydrocephalus – Team Hydro Speaks Up

by Pete Finlayson There is an old story about a beach.  It was the morning after a storm and the water had retreated back to its usual levels.  A young man was jogging on this beach.  He moved quickly and athletically along the sand, watching the waves crashing on his left as he ran.  On […]

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A Magical, Memorable Event

By David Moore, Hydrocephalus Association Director of Development Puff the Magic Dragon would have been proud. On Sunday, October 24, legendary folk singer, and author of the aforementioned song, Peter Yarrow (of Peter, Paul and Mary) performed an intimate concert to benefit the Hydrocephalus Association’s Research Initiative. The concert was held at the stately and […]

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Famed Folk Music Artist to Perform Benefit Concert

Take a stroll down memory lane while helping the future of hydrocephalus research by attending Peter Yarrow’s Concert for Hydrocephalus. This family-friendly event will take place on Sunday, October 24, 2010 at 2:30 p.m. The concert will be held at the Residence of the Australian Ambassador in Washington, D.C. Peter Yarrow, of the legendary folk […]

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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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