Education

NINDS Director Dr. Landis to Headline HA’s Conference in June

We are honored and thrilled to report that Dr. Story C. Landis, the distinguished Director of the National Institute for Neurological Disorders and Stroke (NINDS), will be a keynote speaker at the Hydrocephalus Association’s 12th National Conference on Hydrocephalus: Getting to The Heart of Hydrocephalus. Dr. Landis will address the importance of hydrocephalus research and how this […]

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Happy Valentine’s Day! Let’s Show we Care!

The Hydrocephalus Association is dedicated to helping families and individuals whose lives have been touched by hydrocephalus and the professionals who work diligently to create a brighter future through medical excellence and research. There are many ways to show your love and care to the community. We invite you to:     Register to attend […]

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Register Today for the 12th National Conference on Hydrocephalus!

June 27-July 1, 2012 Bethesda North Marriott Hotel & Conference Center, Bethesda, MD The goal of the conference is to provide tools and connections to address the medical, educational and social challenges of living with hydrocephalus and to provide the opportunity for an enjoyable get together! Hydrocephalus is a chronic condition for which there is […]

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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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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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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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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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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 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 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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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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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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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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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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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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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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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 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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