Update on Health Care Research Funding: Hydrocephalus Association in Action

We here at the Hydrocephalus Association (HA) spend a lot of time talking about the work we are doing to fund research, as well as all the work we do to support patients and families affected by hydrocephalus. There is another part of HA’s mission that, frankly, we don’t talk about enough: advocacy.

HA is an advocate for the hydrocephalus community on many fronts: Read more

A Special Message: The Power of Our Voice

Cynthia and I have a confession to make: Whenever we hear about a new medical breakthrough for treating some complex health condition, we immediately think of us and wonder: When will it be our turn? Just the other day, I read an article about a young boy who was cured of HIV, a condition that was relatively unknown until the late 1980s and very difficult to treat. As long-time residents of San Francisco, we have witnessed the AIDS-awareness movement grow from a small group of radical young gay men to a global movement generating support from every gender, race, and creed. This is such a great example of how a few voices can ignite a public outcry and lead to great advancements in awareness and treatment. Read more

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. Read more

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 than 24,000 potential cases, based on the latest information available. Hundreds more could develop hydrocephalus as a result of their injuries, but without the proper screening, their hydrocephalus could go undetected. Read more

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 face health complications and shunt failures, requiring multiple surgeries over the course of a lifetime. There is no time to waste in our battle to find better treatment options and, of course, prevention or a cure. Read more

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 Congressional representatives.

The day started early at 7:00 am, as conference attendees gathered for breakfast and a session presented by John Lawrence and Amy Rosenbaum titled “Climbing Capitol Hill for a Cure.” The session provided and overview of strategies for approaching Congressional Representatives.  This was a perfect addition to Judy Schneider’s hilarious and informative talk of the previous evening, “Getting to the Heart of Congress.” Read more

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 27^th through July 1^st, the HA invites you to join us in Bethesda, MD at our the 12^th National Conference on Hydrocephalus. Read more

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 guidance. If you have ever read a book called The Tipping Point by Malcolm Gladwell, you know that his research shows that it takes 10,000 hours of practice to master a skill. That’s a lot of painstaking hours. The famous Greek writer, Aesop, also gives us a similar lesson in his fable, The Hare and the Tortoise, which most of us read as children. The approach is different from Mr. Gladwell’s, but the message is the same: perseverance is the most defining factor in success. Read more

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 being made in the field were just a few highlights.

HA’s National Conference gives parents, siblings, adults and young adults the opportunity to receive further education on the condition. It is a fun, social gathering where individuals living with the ongoing challenges of hydrocephalus can meet and discover that they are not alone. The National Conference forms long, lasting bonds and friendships, which continue beyond the conference and provide support for years to come. 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

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