Hydrocephaly

September is Hydrocephalus Awareness Month! Here’s What You Can Do…

by Jennifer Bechard, Support Group Liaison This September, for Hydrocephalus Awareness Month, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or to the larger networks of which we […]

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The 12th National Conference on Hydrocephalus

    The Hydrocephalus Association held it’s 12th National Conference on Hydrocephalus in Bethesda, MD from June 27th through July 1st, 2012. As always we gathered to re-establish our sense of community and educate ourselves about hydrocephalus. Conference Highlights: Advocacy Day On Thursday, June 28th, over 200 participants visited their congressional representatives to lobby for […]

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Welcome Aisha Heath, CFRE

The Hydrocephalus Association is pleased to announce Aisha Heath, CFRE  as the new Director of Development. Ms. Heath has devoted her professional career to raising awareness and resources for national organizations supporting the health and well-being of children and families. She has worked in the non-profit sector for over 12 years, fundraising for a variety […]

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“Reason for Hope” Campaign Receives Big Boost

On June 21st, the Hydrocephalus Association (HA) announced the launch of its new $3 million dollar fundraising campaign called “Reason for Hope.”  We are very pleased to announce that we have received a commitment for a gift of $500,000 to that campaign.  The anonymous donor requested that these funds be used in support of HA’s […]

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Benjamin Warf, MD – To Speak at 12th National Conference on Hydrocephalus

We are honored and excited to announce that Benjamin Warf, MD is joining our faculty this June in Bethesda, MD.  Dr. Warf is scheduled to give the Keynote Address during lunch on Saturday June 30th.  His Inspirational Keynote Address will encompass his work treating hydrocephalus in Sub-Saharan Africa. Dr. Warf began his career in pediatric […]

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NetFlix Founder Headlines Hydrocephalus Research Conference

NetFlix Founder and former member of the Hydrocephalus Association Board of Directors Marc Randolph will be a keynote speaker at the upcoming research conference, “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes,” scheduled for July 9 – 11, 2012, in Seattle, Washington. Mr. Randolph was the founding CEO of NetFlix, and served as a member […]

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HA Partners with HCRN to Promote Groundbreaking Clinical Research

By Dawn Mancuso, FASAE, CAE, Hydrocephalus Association CEO I am pleased to announce that the Hydrocephalus Association (HA) and the Hydrocephalus Clinical Research Network (HCRN) have signed a partnership agreement that will ensure the continuation of HCRN’s hydrocephalus research. We are honored to be partnered with the first and, so far, only clinical research network […]

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The Hydrocephalus Association co-hosts the 2012 Research Conference

This July, the Hydrocephalus Association is co-hosting a ground-breaking research conference designed to bring together pre-eminent researchers and scientists to advance research around hydrocephalus. The purpose of this conference is to provide an update on the latest innovations and findings going on in hydrocephalus research, and to strategize about the next great breakthroughs. Scheduled for […]

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Ever Wonder What it’s Like to Be Part of a Hydrocephalus Conference?

Watch the highlights from our last conference on hydrocephalus, which took place in Cleveland, OH in 2010. We invite you to register for the upcoming 12th National Conference, which will be held in Bethesda, MD from this June 26th through July 1st.

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re•search /ˈrēˌsərCH/

By Dawn Mancuso, HA CEO A very famous author from across the pond (hint: “…that which we call a rose by any other name would smell as sweet”) once asked “What’s in a name?” As I travel to meetings on behalf of the Hydrocephalus Association (HA), and as I talk to more and more people […]

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There are a million reasons to walk….HA WALKs Update!

By Randi Corey, HA Director of Special Events New WALK Chair’s Training Meeting: In February Hydrocephalus Association held the 2nd annual training meeting for HA’s New WALK Chairs in Charlotte, NC.  New Chairs included Shawn and Julie Robinson (starting a new WALK in Northern Kentucky/Cincinnati), Genia Hastings and Melissa Arsenault (taking on a new WALK […]

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Meet Teens Take Charge (TTC) Council Member: Madison

By: Madison Pardi Hi, my name is Madison and I am 14 years old and a freshman in high school. I was diagnosed with hydrocephalus when I was 10 weeks old. I have had 5 surgeries and my last shunt revision was 11 years ago. When I was a baby I crawled and walked later […]

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12 National Conference on Hydrocephalus: Travel Tips

As you make your way to the 12th National Conference on Hydrocephalus in Bethesda, MD, here is some information to help you plan your trip. Area Airports 1)    Washington Dulles International Airport Chantilly, VA www.metwashairports.com/dulles/dulles.htm Distance from hotel: 25 miles 2)    Ronald Reagan Washington National Airport Arlington, VA www.metwashairports.com/reagan/reagan.htm Distance from hotel: 23 miles 3)   […]

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A Season of Change

By Dawn Mancuso, HA CEO I do not know what this winter has been like where you live, but here in the D.C. area, the winter has been much more like a lamb than a lion. Not that I am complaining, mind you, but it does mean that the trees and plants in the area […]

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Advocacy Day in Washington, DC: Climbing Capitol Hill for a Cure!

“On Hydrocephalus Advocacy Day, May 30, 2006, 120 hearty souls braved the heat in Washington, D.C. on a mission to ask our elected representatives to devote more federal support to hydrocephalus research and treatment. I was moved by everyone’s vibrant courage. Though most of you had never pursued legislative advocacy before, we did amazing work […]

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Hydrocephalus Association’s Resident’s Prize: Dr. Ashley G. Tian

One way the Hydrocephalus Association promotes research and leadership in hydrocephalus is through our annual Resident’s Prize. This prize is awarded each year to the most promising hydrocephalus-related research paper presented by a neurosurgical resident at the Pediatric Section meeting of the American Association of Neurological Surgeons/Congress of Neurological Surgeons (AANS/CNS). The prize is designed […]

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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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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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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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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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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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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 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 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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