2011

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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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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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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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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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 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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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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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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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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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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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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