By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!
Dr. Koschnitzky continues our Science Facts blog series with an explanation of the various clinical trial designs we find in hydrocephalus research.
Enrolling in clinical research trials is one way our community can become active participants in the quest to improve outcomes and find a cure for hydrocephalus. Learn about ongoing clinical research studies and how you can be involved.
The Vanderbilt University Medical Center Reporter reports that Chevis Shannon, MBA, MPH, Dr.PH., will serve as the director of the Vanderbilt Pediatric Neurosurgery Clinical Research Initiative. Dr. Shannon will play an instrumental role in establishing Vanderbilt as a collaborator in the Hydrocephalus Clinical Research Network (HCRN).
We would like to congratulate HCRN for being acknowledged for their participation in supporting the hospitals ranked in the 2013 ranking of children’s hospitals in the U.S. by US News & World Report. The acknowledgement of HCRN’s role in these institutions is a great affirmation of their work in the research around the causes and treatment of hydrocephalus.
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 […]
Dr. Steven Schiff of Penn State has had his findings published in the Center for Infectious Disease Dynamics (CIDD) journal. To read the full article, click here.
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
by Rick Smith, HA Acting CEO As we put the final touches on our five year Research Initiative Plan, we wanted to find an additional way to convey our hope for the impact of increased hydrocephalus research. We were going to release this video with the plan but because September is National Hydrocephalus Awareness month, […]
Jerold Chun, MD, PhD, a professor at Scripps Research and its Dorris Neuroscience Center, has discovered a significant factor in the development of congenital hydrocephalus. Chun describes the discovery as a proof of concept that could lead to medical treatments for hydrocephalus. His finding involves the discovery of abnormally high levels of a lipid called […]
There is a growing body of work surrounding Normal Pressure Hydrocephalus (NPH) that simultaneously moves us forward and illustrates how far there is to go. Two recently published studies aim at establishing parameters of the effects of NPH specifically on cognition, and generally, on the effect that treatment can have on quality of life. The […]
The Hydrocephalus Clinical Research Network (HCRN) study on Shunt Protocols, headed by Dr. John Kestle, is making waves in the neurosurgical community. Published in the Journal of Neurosurgery this month, it is an important paper that has already been made available to the public. Click here to read the full article. Also, Dr. Kestle was […]
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 […]