Advocacy

Motorcycle Club Raises Funds for Young Boy with Hydrocephalus

The Steel Talon motorcycle club raised funds for a NY boy and his family. To read the full article, click here.

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Hershey Park WALK Featured on Pennlive.com

The August 4th Hershey, PA WALK is featured on Pennlive.com. To read the full article, click here.

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St. Louis WALK Appears in Local Newspaper

The STLtoday.com featured the upcoming 6th Annual St. Louis WALK occurring on September 23rd at Queeny Park. To read the full article, click here.

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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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Congress Discusses Hydrocephalus and our Military

by Paul Gross, HA Chairman of the Board of Directors Yesterday, hydrocephalus was a hot topic in Congress during the debate over the annual defense spending bill. Experts believe that two-thirds of our current and former military service members suffering from moderate to severe traumatic brain injuries are at risk of developing hydrocephalus – more […]

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Advocacy Day and the 12th National Conference

Famed football coach Vince Lombardi once said that “My teams have never lost a football game. They just occasionally run out of time to win it.” Here at Hydrocephalus Association, we know first-hand just how time is of the essence. Each day, more children and adults are diagnosed with hydrocephalus. And, those previously diagnosed with hydrocephalus […]

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Hydrocephalus Association Brings its Message to Capitol Hill!

On Thursday, the 28th of July, the second day of our conference, we held our second Advocacy Day on Capitol Hill, “Climbing Capitol Hill for a Cure.”  Hundreds of members of the hydrocephalus community braved the intense heat of a Washington, DC summer day to bring our message of increased funding for hydrocephalus research to […]

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Only One Week Away!!! 12th National Conference on Hydrocephalus! What it’s all about!

Our biennial hydrocephalus conference is one of the traditional cornerstones of the Hydrocephalus Association’s commitment to meeting the far ranging needs of our community. This year, from June 27th through July 1st, the HA invites you to join us in Bethesda, MD at our the 12th National Conference on Hydrocephalus. Education, education, education… Hydrocephalus is […]

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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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Slow and Steady wins the Race

By Dawn Mancuso, FASAE, CAE, HA CEO Sometimes we all encounter frustration. We feel like we work and we work, but that things just don’t change as fast as we would like or need.  At times like these, when my patience is wearing thin, I often look to those wiser than myself for inspiration and […]

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Climbing Capitol Hill for a Cure! A Day of Action

By Jennifer Bechard, Support Liaison My first conference was at the 11th National Conference on Hydrocephalus in Cleveland OH and it certainly was an experience that I will cherish forever. Meeting world-renowned medical professionals, watching a live endoscopic third ventriculostomy (ETV) surgery, marching in a parade and hearing researchers speak about the advancements and works […]

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12th National Conference: Tips on how you can afford it!

The National Conference on Hydrocephalus is our biennial gathering to self-educate and make or renew connections. Join doctors, nurses, parents, children, people living with hydrocephalus and people affected by it, as we celebrate our community. While we strive to keep costs down for attendees and provide some financial aid for registration, there are other costs […]

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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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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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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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From the CEO: Another way to say “I Care”

As I sit and write this blog to you, I am thinking about what the month of February means to the hydrocephalus community. Now, for many people, it is the month when the Super Bowl takes place – the culmination of the season-long competition to find out which team goes home with the coveted prize […]

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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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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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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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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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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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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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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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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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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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Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

by Pip Marks, HA Director of Support and Education Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of your medical records including images (CT scans and MRIs) is good advice for any person receiving medical attention. For those who have hydrocephalus or other chronic conditions, it is […]

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Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

By Jenna Ellis, Co-Chair of HA’s Detroit, MI WALK In the past, (hydrocephalus) WALK Chairs have gotten to know each other through emails and brief encounters at conferences. There was always a feeling that more time was needed to talk about WALK.  This year veteran WALK Chairs from all over the United States gathered in […]

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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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