Research Blog

Videos from the IF Global Conference

View videos from the International Federation for Spina Bifida and Hydrocephalus’ 25th International Conference, GENErating Changes, in Buenos Aires, Argentina on their YouTube channel.

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Upcoming Research Webinar: Delivering on a Promise

Join the Hydrocephalus Association on Monday, March 3, 2014, at 7:00 p.m. EST for our next webinar, “Research Update: Delivering on a Promise,” exploring the latest advances in hydrocephalus research and showcasing several exciting studies being conducted to better understand the basic science of hydrocephalus and clinical protocols for treating patients.

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Study Seeking Participants on the Clinical, Anatomic and Genetic features of Pediatric Hydrocephalus

Researchers at Seattle Children’s Hospital seek to enroll participants in a study on the clinical, anatomic and genetic features of hydrocephalus.

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Looking Back…Moving Forward: A Focus on Hydrocephalus Research

As the Hydrocephalus Association continues our interview series commemorating our 30th anniversary, we sit down with Dr. John Kestle, founding member of the Hydrocephalus Clinical Research Network (HCRN) and member of our Board of Directors and Medical Advisory Board, as he reflects on the current state and future of hydrocephalus research.

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Denver WALK Featured in OurColoradoNews

OurColoradoNews.com features the upcoming Denver WALK, led by Phyllis Rogers. 700 walkers are expected to attend the event to raise funds to support research and education to eliminate the challenges of hydrocephalus.

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Happening NOW: HA Attends Annual AANS Meeting

Each year the American Association for Neurological Surgeons (AANS) hosts its annual scientific meeting bringing together neurosurgeons from across the country. This year’s meeting entitled, “Changing Our Culture to Advance Patient Safety,” focuses on the patient-safety movement. HA staff members join esteemed members of the medical community for this exciting event.

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Looking Back…Moving Forward: One Vision Built on Determination

Hydrocephalus Association commemorates our 30th anniversary with a series of interviews with members of our community. These intimate and conversational pieces provide both educational content as well as a historical perspective on the heart behind the work of our association. This week we sit down with two of our founding members, Emily Fudge and Cynthia Solomon, to discuss the early days of forming the association, including their vision and their challenges.

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Looking Back…Moving Forward: Commemorating 30 Years

Over the last 30 years, the Hydrocephalus Association has significantly impacted the health care and scientific communities as well as the lives of individuals affected by hydrocephalus. We look back on the last 30 years presented in a timeline of our significant milestones.

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Announcing Our 2013 Scientific and Medical Review Committee

The Hydrocephalus Association is excited to announce the formation of our 2013 Scientific and Medical Review Committee (SMRC) for our current grant opportunity in partnership with the Rudi Schulte Research Institute.

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Resolve to Action

2013 is the Hydrocephalus Association’s 30th Anniversary year, and the staff and board wants to spend some time in the next 12 months commemorating the rich legacy built by all of our volunteers, celebrating the robust community we have come together to foster, and recommitting our resources to end the challenges of hydrocephalus.

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It’s Never Too Late

I’m writing in memory of my daughter, Ellen. I am committed to sharing Ellen’s story to help raise awareness to the great support services and work of the Hydrocephalus Association as well as to help raise funds to find better treatments options for everyone living with hydrocephalus.

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A Gift of Advocacy: Support Your Voice in Washington

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 […]

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A Gift of Legacy: Join the Fudge Solomon Legacy Society

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 […]

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New Cause of Hydrocephalus Discovered

The IowaNow reports that researchers at the University of Iowa Graduate Program in Neuroscience have discovered a new cause for hydrocephalus. Working with mice, the researchers identified a defect in the development of immature brain cells.

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So Many Reasons to be Thankful. So Many Ways to Give.

As the season of giving approaches, the Hydrocephalus Association encourages you to give the gift of Hope this holiday by supporting life-saving research and patient education programs for our community.

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Tennessee Mom Calls for Research Funding of Hydrocephalus

Chara McLaughen raises awareness and calls for increased funding for research into hydrocephalus.

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Duke University Study on Stem Blood Cell Infusions to Benefit Infants with Congenital Hydrocphalus

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.

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A Novel Micropatterned Microvalve Developed for the Treatment of Hydrocephalus

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.

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September is Hydrocephalus Awareness Month! Here’s What You Can Do…

by Jennifer Bechard, Support Group Liaison This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or to the larger networks of which we are a part. This […]

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The Unique Challenges of Adult Hydrocephalus

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 […]

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Hydrocephalus Discovery Published in Penn State CIDD Journal

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.

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…times, they are a changin’

  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, […]

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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. Conference Highlights: Advocacy Day On Thursday, June 28th, over 200 participants visited their congressional representatives to lobby for […]

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Hydrocephalus Research Conference Highlights

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 […]

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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 […]

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“Reason for Hope” Campaign Receives Big Boost

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 […]

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“Reason for Hope” – HA’s New Research Campaign

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 […]

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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 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 […]

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NetFlix Founder Headlines Hydrocephalus Research Conference

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 […]

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NIH Supports Upcoming Hydrocephalus Research Conference

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, […]

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HA Partners with HCRN to Promote Groundbreaking Clinical Research

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 […]

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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 […]

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Opportunities in Hydrocephalus Research: Pathways to Better Outcomes

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 […]

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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 […]

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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. 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 […]

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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. […]

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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 […]

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Hydrocephalus Association’s Resident’s Prize: Dr. Ashley G. Tian

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 […]

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Happy Valentine’s Day! Let’s Show we Care!

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 […]

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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 […]

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