The Hydrocephalus Association Hosts Research Workshop to Advance Hydrocephalus Research & Non-Invasive Therapies More than 75 experts in hydrocephalus gathered in Cincinnati, OH for the 2024 Research Workshop, titled “Developing Non-Invasive Hydrocephalus Therapies: Advancing Towards Clinical Trials.” This event, which built directly upon the successes from the Fall 2023 Research Workshop, brought together top scientists, doctors, patients, and other stakeholders to advance the treatment of hydrocephalus. This workshop focused on finding ways to better treat hydrocephalus, aiming to make ..read more

Hydrocephalus in Pop Culture Sierra SPEAKS OUTHA’s Support & Education Program Assistant A Review: Grey’s Anatomy Airs Episode on Congenital Hydrocephalus Performing Endoscopic Third Ventriculostomy (ETV)  On Thursday, March 29th, ABC’s Grey’s Anatomy aired the third episode of season 20, showcasing a storyline involving Malan, a young child with congenital hydrocephalus. After viewing the episode, I’m eager to share my reflections on the discussion it prompted. But before diving in, let’s recap the events of the episode. The viewer first meets Malan when her mother, Maria-Flor, bring ..read more

Hydrocephalus Association Advocacy Update Congress FINALLY passed government funding for 2024. It took a while, it felt like forever…but it’s done. The budget included the Defense Appropriations bill and the Labor, HHS, Education Appropriations (LHHS) bill. You may be thinking, “What does this mean?” Well, the passing of this means that the Congressionally Directed Medical Research Program (CDMRP) can now begin accepting applications for their 2024 grant process. It also means that the NIH can move forward with new research grants and projects. Although FY 2024 funding for the two research ave ..read more

  Kim Apurado has been awarded the prestigious Mary Decker Mentorship Award. This accolade, open to all American Association of Neuroscience Nurses (AANN) members, celebrates neuroscience nurses who exemplify excellence in mentoring. Named after Mary Decker, a devoted nurse practitioner and Hydrocephalus Association Medical Advisory Board member, the award honors individuals who passionately guide both novice and experienced nurses.  As the recipient, Kim will receive a $600 scholarship from the Hydrocephalus Association (HA) to be used for travel expenses to the AANN Annual Meeting ..read more

The Hydrocephalus Association recently partnered with the Defense Health Research Consortium (DHRC) to host a research-centered Congressional Briefing on Capitol Hill. The briefing, which took place on Friday, March 15th, brought in a variety of speakers to educate congressional staffers on the importance of the Congressionally Directed Medical Research Program (CDMRP), showcasing hydrocephalus to demonstrate the life-changing impact of the funding. The CDMRP, which is under the Department of Defense, funds high-impact, high-risk, and high-gain projects with the goal of improving patient care ..read more

Hydrocephalus Association Highlights the Influence of Dr. Bonnie BlazerYost during National Women’s History Month Dr. Bonnie BlazerYost – Kidney scientist turned hydrocephalus researcher has been awarded multi-million dollar grants from the Department of Defense. Medical research is painstaking, methodical, and not often a straightforward process. Dr. Bonnie BlazerYost, Ph.D., did not set out to cure hydrocephalus. As Professor of Biology at Indiana University-Purdue University Indianapolis, her specialty was renal (kidney) physiology and studying how the body moves salt and water around for ..read more

  Meet two incredible women who are inspiring HOPE throughout the hydrocephalus community with their dedicated expertise. Dr. Shenandoah “Dody” Robinson – Dr. Robinson is a highly recognized Professor of Neurosurgery (PAR) at Johns Hopkins Children’s Center and holds active tenure at Kennedy Krieger Institute.  Her subspecialty interests are the surgical treatment of epilepsy, cerebral palsy and related movement disorders, as well as congenital hydrocephalus.  Photo (left): Dr. Robinson attends Maryland WALK to show unwavering support  Dr. Lauren Jantzie – Dr. Jantzie is an ..read more

Hydrocephalus Association Advocacy Update Updates from Washington….  Congress has once again averted another shutdown. Yes, you heard that right, another shutdown… This short term continuing resolution (CR) will fund the government until March 8 and March 22. This will hopefully give both chambers enough time to pass the 12 FY 2024 appropriations bills that need funding. This includes the Defense Appropriations Bill that funds the Congressionally Directed Medical Research Program (CDMRP), which funds groundbreaking hydrocephalus research each year. If funding for this program is not passe ..read more

Members from the Hydrocephalus Association Action Network came to Washington, DC, to participate in the Everylife Foundation for Rare Disease’s Rare Disease Week, which took place from February 25-28, 2024. The annual event brings together advocates from across the country to lobby on Capitol Hill for the needs of the Rare Disease Community. HA first participated in the event in 2016, uniting our hydrocephalus voice with the larger rare disease community.  Although hydrocephalus as a whole is not considered a rare disease due to the over 1 million individuals who have the condition, the ..read more

Location Johns Hopkins Children’s Center and Johns Hopkins Bayview Medical Center Neonatal Intensive Care Units (NICUs) Baltimore, Maryland Background The Hydrocephalus Association invites you to participate in an NIH-sponsored study currently being conducted by Shenandoah “Dody” Robinson, MD, Professor of Neurosurgery, Neurology and Pediatrics at Johns Hopkins University and the SCEMPI Clinical Trials team, in collaboration with the Johns Hopkins Neurosciences Intensive Care Nursery (NICN). This is the first intervention trial for very preterm newborns with a severe brain bleed (intraventricu ..read more