The Hydrocephalus Association’s advocacy strategy spans a broad range of activities from local, grassroots awareness efforts such as our WALK program, to state level efforts to establish hydrocephalus awareness days/months, to our federal efforts which focus on research programs at the National Institutes of Health (NIH) and legislation with Congress. Our primary advocacy goal is […]
The Legacy Society provides an opportunity for supporters to ensure the organization’s research, support, advocacy and education work continues by placing a “future” gift to the Hydrocephalus Association in their wills, trusts or estate plans. As a member, you will demonstrate your commitment to HA’s mission to eliminate the challenges of hydrocephalus and help to […]
Update on the current research initiatives of the Hydrocephalus Association, focusing on a presentation by Paul Gross, Board Chairman, at the Trans-NIH Hydrocephalus Meeting in October. The meeting included representatives from four different Institutes within the NIH – the NINDS, the National Institute of Child Health and Human Development (NICHD), the National Heart, Lung & Blood Institute, and the National Institute of Biomedical Imaging and Bioengineering (NIBIB).
Hydrocephalus Clinic Research Network, Lead Investigator, Professor Jay Wellons, has been awarded his MSPH Degree by the University of Alabama, Birmingham.
Baby Tyler, born in Pittsburgh, PA, receives infusions comprised of stem cell blood from her umbilical cord and placenta as part of a study by Duke University blood and marrow transplant program. To read the full article, click here.
Researchers at Arizona State University in collaboration with Phoenix Children’s Hospital have developed a novel microvalve with a passive and simple design/implantation that may result in lower failure rates. To read the full article, click here.
By Dawn Mancuso “The difference between children and adults is that they’re shorter – not dumber.” ― Mo Willems Normally, I would agree with Mr. Willems. We adults tend to underestimate the intelligence of the children around us, assuming that our life experiences make us somehow smarter.The Unique Challenges of Adult Hydrocephalus However, I’ve learned […]
By Karima Roumila, MPH Congratulations to Michael A. Williams, M.D., medical director of The Sandra and Malcolm Berman Brain & Spine Institute (BSI) at LifeBridge Health. Dr. Williams, who is a member of the Hydrocephalus Association’s Medical Advisory Board , and served as the co-chair of our 12th National Conference on Hydrocephalus, recently received a […]
By Dawn Mancuso “…Come senators, congressmen, please heed the call” -Bob Dylan July has been an incredibly busy month for the Hydrocephalus Association. In fact, it is safe to say that the word busy hardly does it justice. At the beginning of the month, we wrapped up our biennial conference on hydrocephalus in Bethesda, […]
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 […]
By Paul Gross, Chairman of the HA Board of Directors The third NIH sponsored research conference on hydrocephalus concluded on July 11th and by all accounts was a resounding success! Entitled “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes“, the conference featured a broad spectrum of thought leaders from bench scientists in molecular biology to […]
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 […]
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 […]
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 […]
By Tom Smith We are pleased to announce our new $3 million dollar fundraising campaign called “Reason for Hope”. Its purpose is to fund a five year Research Initiative plan intended to push hydrocephalus research forward. The funds will be used to implement three areas deemed crucial to eventually finding a cure for hydrocephalus. Stimulate […]
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 […]
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 […]
We are excited to announce that we have received a commitment from the National Institute of Neurological Disorders and Stroke (NINDS), the leading federal funder of brain science at the National Institutes of Health (NIH), to support our upcoming research conference entitled “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes” in Seattle on July 9-11, […]
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 […]
by Paul Gross, Chairman of the HA Board of Directors I am excited to announce that Hydrocephalus Association (HA) has partnered with the Rudi Schulte Research Institute (RSRI) to release a major new Request for Applications (RFA) in conjunction with our upcoming research conference in Seattle on July 9-11. Rudi Schulte was one of the […]
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 […]
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 […]
The Hydrocephalus Association, in conjunction with several other institutes and organizations, is pleased to announce a landmark research conference to be held July 9-11, 2012 in Seattle, WA. The title of the conference is “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes.” The focus will be the discussion of current hydrocephalus research from several different […]
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 […]
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 […]
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. […]
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.
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 […]
We are honored and thrilled to report that Dr. Story C. Landis, the distinguished Director of the National Institute for Neurological Disorders and Stroke (NINDS), will be a keynote speaker at the Hydrocephalus Association’s 12th National Conference on Hydrocephalus: Getting to The Heart of Hydrocephalus. Dr. Landis will address the importance of hydrocephalus research and how this […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
By Randi Corey, National Director of Special Events As the year winds down Hydrocephalus Association would like to recognize those volunteers who conduct fundraising events for HA throughout the year. These volunteers initiate the event, plan and organize it, market it and implement it – and all in support of HA’s mission! These special events […]
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 […]
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 […]
Dr. Josh Medow first came into contact with hydrocephalus as a resident in a Madison, WI hospital and right away recognized a major issue while treating a child with a suspected shunt failure. Medow realized that there was no quick, unobtrusive way of checking intracranial pressure. Today, Dr. Medow is an attending neurosurgeon […]