hydrocephalus

Normal Pressure Hydrocephalus Guidelines

By Tom Smith and Michael Williams, MD In 2000, the late Anthony Marmarou, PhD convened an independent study group to begin the process of addressing one of the major issues surrounding Normal Pressure Hydrocephalus (NPH).  After convening, these experts published five guidelines concerning NPH. The guidelines, for the first time, rigorously reviewed the existing evidence […]

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Hydrocephalus Awareness Hits the Ice

By Jordan Faigen, National Campaigns Manager Are you looking for great ways to raise money as a WALK participant? Eileen Rodger, the HA South Florida WALK Chair, spent an evening on the ice and raised over $1,000 in a matter of hours. Read her inspiring story and explore your community for creative fundraising opportunities, then […]

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Tributes to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD

Harold O. Conn, MD was a world-famous doctor specializing in diseases of the liver.  After his retirement he developed Normal Pressure Hydrocephalus (NPH) and thus embarked on his second career which was to study and spread awareness of this condition.  His perspective was unique and informed, and his work was generous and insightful.  In this […]

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Join the 2012 Virtual WALK Community Today

By Jordan Faigen, National Campaigns Manager While our HA WALK events are reaching new cities year after year, many times families and individuals still cannot attend even the closest event. We started our Virtual WALK program last year and we are pleased to announce that we are launching our 2012 Virtual WALK website! By registering […]

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2012 Hydrocephalus Scholarships Now Available

The Hydrocephalus Association is pleased to offer nine scholarships to young adults with hydrocephalus. The scholarships are $1,000 each and will be awarded in June.  To read more about the instructions, criteria and how to apply please click here.  We are accepting applications now through April 1, 2012!

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2012 Neuro Film Festival

There is an opportunity to submit a short video to The American Academy of Neurology Foundation telling your story about why more research is needed to find a cure to hydrocephalus. Please read the following on the guidelines and deadline for submission.     The American Academy of Neurology Foundation is calling on all neurology […]

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Read About Transition Care in Our Hydrocephalus Resource Library

By Tom Smith, HA Adult Services & Outreach Coordinator A paper by Harold Rekate, MD, ‘The Pediatric Neurosurgical Patient: The Challenge of Growing Up’, published in Seminars in Pediatric Neurology, Vol. 16, 2009 discusses the difficulties faced by children born with hydrocephalus and Spina Bifida as they move from the coordinated care of pediatric facilities […]

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2012 Hydrocephalus Association Scholarships

By Karima Roumila, MPH, Community Programs Director We are very pleased to offer nine scholarships to young adults with hydrocephalus. On the 18th year of the program we are honored to announce the amount of each scholarship has been increased to $1,000. These scholarships are funded by the Hydrocephalus Association and by two Gerard Swartz […]

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From the CEO: Auld Lang Syne

I don’t know about you, but the start of every new year makes me a little philosophical. Maybe it’s all the talk about resolutions. Maybe it’s just the best time for me to take stock of all the good things that have happened in the last year, and to make plans for the year ahead. […]

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Special Volunteers Conducting Special Events!

By Randi Corey, HA Director of Special Events 2011 has been a spectacular year for HA WALKs and Special Events. HA’s 2011 WALKs and Special Event season raised over $1,000,000! This is a 55% increase over last year’s total. And all of it is due to HA’s WALK Chairs and all of the volunteers who […]

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Special Volunteers Conducting Special Events!

By Randi Corey, National Director of Special Events As the year winds down Hydrocephalus Association would like to recognize those volunteers who conduct fundraising events for HA throughout the year.  These volunteers initiate the event, plan and organize it, market it and implement it – and all in support of HA’s mission!  These special events […]

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2011 Hydrocephalus Association WALK Highlights

By Jordan Faigen, National Campaigns Manager Throughout the 2011 WALK season I have worked with over 60 WALK Chairs to coordinate 30 plus events all over the country. The Hydrocephalus Association’s (HA) WALK program started in 1983 with a few families walking across the Bay Bridge in San Francisco, CA to support each other and […]

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HA Funds Research, Announces New Research Grants

By Gavin Reed, HA Research Associate HA is pleased to announce two recipients of the Hydrocephalus Association’s grant program focusing on CSF Production, Flow, and Regulation. The long term goal of these grants is to create therapeutic interventions such as a pill that could control intracranial pressure. The grantees are: Pat McAllister, Ph.D., Professor of […]

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Elijah Speaks Up About Hydrocephalus!

By Elijah Lawrence I was diagnosed with hydrocephalus before I was born. When I was four days old, I had my first shunt put in. Since then, I have had four revisions, but I have had my current shunt for five years. I am treated at the Children’s National Medical Center in Washington D.C. I […]

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Hydrocephalus Association Support Group Partners, Pt. 1

By Jennifer Bechard, Support Group Liaison Support groups are a vital and cherished resource to our hydrocephalus community. The Hydrocephalus Association currently has 28 support groups that provide open forums and educational meetings to individuals touched by hydrocephalus throughout the country. Support Group Leaders each have their own experiences with hydrocephalus and understand the trials […]

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Ashley Takes Charge of Her Hydrocephalus!

Introduction by Jennifer Bechard, Support Group Liaison Recently, Teens Take Charge Advisory Council member, Nicole Padron, asked the following question on Facebook: “What is some helpful advice that you would give someone who has been recently diagnosed with hydrocephalus?” Teens across the country began sharing their experiences with hydrocephalus as well as advice for individuals […]

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This Way In: Should You Join a Health Insurance Exchange?

By Gina Shaw The following article is reprinted by permission from Neurology Now: www.neurologynow.com, October/November 2011 – Volume 7 – Issue 5 – p 18–20 When the Affordable Care Act was signed into law in March 2010, one of the centerpieces of the plan was the creation of “health insurance exchanges.” These state-by-state marketplaces allow […]

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A word from our Summer Intern Tessa!

The non-profit sector is something I find very over looked by the general public. Going into my summer internship, I was unaware of how much work it takes for a non-profit organization to be successful. As an intern I performed a variety of different tasks, and learned the most from being in the hands-on environment. […]

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Results of our Facebook post: “What caused your hydrocephalus?”

By Karima Roumila, MPH, Community Programs Director After posing this question to our Facebook members we received many comments from our community about the causes of their hydrocephalus as well as their age of diagnosis.  61% of the respondents said they or their loved one were born with hydrocephalus, meaning they have congenital hydrocephalus, while, […]

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Meet our Conference Medical Chairs for the 2012 Conference on Hydrocephalus!

For more than 20 years, the Hydrocephalus Association (HA) has been bringing families and professionals together at the National Conferences on Hydrocephalus. The 2012, 12th Conference: Getting to the Heart of Hydrocephalus is no exception. This year we are thrilled to have Drs. Marion L. Walker and Michael A. Williams chairing the conference.  Both have […]

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University of Wisconsin Doctor Creates Pressure Monitor

Dr. Josh Medow first came into contact with hydrocephalus as a resident in a Madison, WI hospital and right away recognized a major issue while treating a child with a suspected shunt failure.  Medow realized that there was no quick, unobtrusive way of checking intracranial pressure.     Today, Dr. Medow is an attending neurosurgeon […]

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Idaho Parents Stage Media Blitz for Hydrocephalus Awareness Month

McQ and Heather Olsen of Boise, ID are the proud parents of Tessa who was diagnosed at 20 weeks of age with aqueductal stenosis and hydrocephalus.  Last month, McQ and Heather took it upon themselves to raise awareness about hydrocephalus.  During the month of September, National Hydrocephalus Awareness Month, they appeared in various local news […]

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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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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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HA Visit To Capitol Hill Yields Insights into Hydrocephalus Research Funding

By Paul Gross, HA Chairman Board of Directors HA had a very productive day on Capitol Hill last Friday. Our day began with a meeting with the staff of the Armed Services committee to explore the funding opportunities for hydrocephalus in the Congressionally Directed Medical Research Program (CDMRP) and the Defense Appropriations for Traumatic Brain […]

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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 Announces Dawn Mancuso as Chief Executive Officer

By Paul Gross, Chairman of the Board I am pleased to share the news that Hydrocephalus Association has successfully concluded its search for a new Chief Executive Officer with the appointment of Dawn Mancuso, FASAE, CAE. We are very excited to have Dawn join HA as our new CEO, and I am really looking forward […]

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HA to Meet With Key National Representatives

By Rick Smith, HA Acting CEO As we enter September, which has been designated as National Hydrocephalus Awareness Month, HA is working with the Pediatric Hydrocephalus Foundation and other organizations on the planning and organizing of A Day of Testimony on Capitol Hill. The Day of Testimony will take place on September 23rd, and our […]

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HYDROCEPHALUS WALK TIP OF THE MONTH – August 2011

by Randi Corey, HA Director of Special Events Thank you! As we enter into the heaviest part of our annual Hydrocephalus WALK season we extend special thanks to all of our WALK Chairs, our Team Captains and our walkers! Your participation in the WALK program helps to ensure Hydrocephalus Association (HA) can continue its vital […]

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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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Normal Pressure Hydrocephalus (NPH) Outreach Initiative – A Call for Action!

By Tom Smith, HA Adult Services & Outreach Coordinator The Need Best estimates indicate that there are 350,000 persons in the United States living with Normal Pressure Hydrocephalus (NPH). Roughly five percent of persons diagnosed with Alzheimer’s or Parkinson ‘s disease actually have misdiagnosed NPH. NPH mostly affects people over the age of 55 and […]

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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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Hydrocephalus a Global Health Issue

by Tom Smith, HA Adult Services and Outreach Coordinator A congressional hearing was held yesterday in front of the House Subcommittee on Africa, Global Health, and Human Rights discussing research and treatments for hydrocephalus that could benefit children around the world. Benjamin Warf, MD, a pediatric neurosurgeon at the Children’s Hospital in Boston, MA was […]

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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 Virtual WALK

The Hydrocephalus Association’s WALK-a-thon program was once just a small group of San Francisco Bay area families taking a stroll to support each other and the hydrocephalus community. Now we have over 30 WALK events throughout the country with more than 8,000 participants, raising over $750,000! While we are always adding new WALK sites to […]

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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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