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 – a Super Bowl ring. To others, especially many here in DC, it’s all about the ongoing political primaries which will ultimately determine who is running for the most coveted office in the country – that of the President of the United States. For those more romantic at heart, February hosts Valentine’s Day, when we are reminded to say “I love you” to all those special people in our lives. Read more
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 article HA board member Marvin Sussman, PhD and Carlos Hakim, PhD pay tribute to Dr. Conn and his work. Read more
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 outlets, both radio and television, as a campaign to introduce hydrocephalus to as many people as possible. Read more
URGENT: Contact Your Congressman Today Regarding NIH Funding
In the face of the budget crisis, we have been very concerned that Congress would cut the budget for the National Institutes of Health which are the largest funders of hydrocephalus research. Fortunately, the House of Representatives released their version of the Appropriations Bill for Labor Health and Human Services recommending an INCREASE for the NIH budget. Please read the attached letter from the American Brain Coalition of which Hydrocephalus Association is a member organization and follow the instructions for contacting your Congressional representatives TODAY. This simple action on your part creates opportunity for hydrocephalus researchers over the next year.
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 Injury. I was joined by Sergeant James Spence of the 191st Infantry Brigade out of Fort Lewis, Washington who has hydrocephalus after two tours of duty in Iraq; Dr. Michael Williams, Director, Sandra and Malcolm Berman Brain & Spine Institute; and our incoming CEO, Dawn Mancuso. Read more
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 National Institutes of Health. The good news is that spending has tripled since we began our advocacy efforts in late 2004. The bad news is that with less than $10 million spent in 2010, the dollar investment per affected person is well below what it should be given the estimated 1 million Americans that suffer from the condition.
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. Read more
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 new members and brings to the Council his entrepreneurial perspective, successful business experience, and a deep, passionate commitment to finding answers for people living with hydrocephalus. Read more
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 goal will be to educate national legislators on the need to devote more resources to hydrocephalus research. Our delegation will be led by Board Chairman, Paul Gross, with other HA speakers including Jenn Bechard (HA Staff), and Michael Williams, MD (HA Medical Advisory Board). In addition, our D.C. delegation has arranged several meetings with key legislators where we will enlist their support on a longer term agenda to secure more resources for hydrocephalus research. We hope to have several important, related, announcements soon, so stay tuned.
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 education, support and research. We plan to feature these exceptional volunteer partners over the next several months, giving you the opportunity to get to know them.
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