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 to consider, such as airfare and accommodations. Because of the chronic nature of hydrocephalus, many of us struggle to make ends meet. So we have put together a tip sheet to give you ideas on identifying sources that might provide financial assistance. Read more

Astronaut Mark Kelly to Headline our 12th National Conference

By Dawn Mancuso, HA CEO

Captain Kelly’s biographical information generously provided by Keppler Speakers

I am so excited about this news I just had to make it the subject of my blog this month – Captain Mark Kelly will be speaking at our hydrocephalus conference in June!

Mark Kelly is an American astronaut, retired US Navy Captain, best-selling author, prostate cancer survivor, and an experienced naval aviator who flew combat missions during the Gulf War. The winner of many awards, including the Legion of Merit, two Defense Superior Service Medals and two Distinguished Flying Crosses, Kelly was selected as an astronaut in 1996. He flew his first of four missions in 2001 aboard Space Shuttle Endeavour, the same space shuttle that he commanded on its final flight in May 2011. He has also commanded Space Shuttle Discovery and is one of only two individuals who have visited the International Space Station on four different occasions. Read more

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.  Read more

New HA School WALK Program, a Win-Win

By Randi Corey, National Director of Special Events and Volunteer Support

At the 2012 Veteran WALK Chair’s meeting Hydrocephalus Association introduced its new School WALK program.  The program was the brainchild of Long Island WALK Co-Chair, Mia Padron.   The event Mia coordinated last fall raised over $4,000 with 114 kids participating in their own “mini-WALK” after school.  Most importantly, all of the school’s 4th graders learned all about hydrocephalus through educational sessions. A shunt manufacturer’s representative accompanied Mia for the education portions of the program, bringing visual aids to share with the class – a shunt model, brain anatomy models, etc. Then Mia’s son, Tyler, answered his classmates’ questions about his condition and treatment. Read more

New HCRN Study Up and Running

By John Kestle, MD, MSc, FRCSC, FACS

(re-posted with the author’s permission)

The HCRN has successfully launched a new, potentially ground-breaking study across the Network. This study, titled Ventricular Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus, or VINOH for short, is funded by a Mentored Young Investigator award from the Hydrocephalus Association received by Dr. Jay Riva-Cambrin at Primary Children’s Medical Center in Salt Lake City, Utah. This study is looking into the short term implications hydrocephalus may have for school-aged patients concerning school performance, cognitive functioning, and social well-being. In addition, this study will be addressing the very important question of if and to what extent ventricle size impacts both, neuropsychological and clinical outcomes. Another exciting aspect of the VINOH study is the collaboration it has initiated across all HCRN Read more

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.

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 affected by hydrocephalus, my conversations always circle back to one common theme: the need for more research on the condition. These conversations have made me stop to ponder just what do we mean by the word “research” and how should HA best serve this goal? Read more

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 in Nashville), Margaret Powers (starting a Houston, Texas WALK), Patti Lampien (re-starting a dormant Wisconsin WALK), Dan and Sara Naragon (new Chairs for our established Greater Detroit area WALK) and Christy Ruth (who hopes to start a WALK in Charlotte, NC next year if she can recruit some help.)  Also joining us for the 2-day meeting were “New Chair Mentors,” Mia Padron (HA’s Long Island WALK Chair) and Phyllis Rogers (our Denver WALK Chair.)  Phyllis and Mia have volunteered to serve as mentors for all of our New Chairs – giving them the benefit of their vast experience with HA WALKs!  I think it’s safe to say that a good time was had by all – while at the same time everyone buckled down and did some serious work – learning all about coordinating a HA WALK.  There are a lot of components and moving parts for your local WALK to be successful and HA wants all of its volunteers to get off to a great start! Read more

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 than everyone else my age and had physical and occupational therapy, but now I row on the weekends, I like to swim and I do hip hop dancing. I have been horseback riding for many years and now I also volunteer at a horseback riding stable for people with different disabilities. Read more

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. Read more

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