From the Association
Raising Awareness on World Hydrocephalus Day
On September 20, the global community is coming together to celebrate World Hydrocephalus Day in support of those living with this often-misunderstood condition.
Friends of General Hospital’s Leslie Charleson Turn Grief Into Advocacy for Normal Pressure Hydrocephalus
Leslie Charleson, beloved for her nearly 50-year run as Dr. Monica Quartermaine on General Hospital, passed away at 79. She lived with NPH.
Building Better Devices: The Impact of the Hydrocephalus Engineering Workshop
The Hydrocephalus Association with the generous support from the Rudi Schulte Research Institute hosted their…
The HAPPIER Registry Paper Is Now Published
We’re thrilled to announce that our HAPPIER registry has been published in a scientific journal—a major step toward ensuring the voices of people with hydrocephalus and their caregivers are reflected in research.
Celebrating Impact. Fueling Hope. Moving Forward Together
Welcome to the first edition of HA’s Development Round-Up—your inside look at how donor support is driving life-changing hydrocephalus research, expanding education and awareness, and strengthening our community programs.
Hydrocephalus Association Statement on Reconciliation Bill Passage
The Hydrocephalus Association is deeply concerned about the bill’s sweeping cuts and changes to Medicaid. This will have severe impacts on healthcare access and coverage for individuals with chronic conditions and disabilities.
The Hydrocephalus Scoop on Capitol Hill — June 2025
June updates on Medicaid cuts, CDMRP research funding, and telehealth bills impacting the hydrocephalus community. Make your voice heard on the Hill!
Learning the Brain: Neuroanatomy Basics for Understanding Hydrocephalus
Neuroanatomy Basics for Understanding Hydrocephalus: A simple guide to neuroanatomy and hydrocephalus.
Explainer of the President’s FY 2026 HHS Budget Proposal
President’s FY 2026 budget proposes major NIH cuts, agency mergers, and restructures that could reduce neuroscience and hydrocephalus research funding.
The Hydrocephalus Scoop on Capitol Hill — May 2025
House passes bill with major Medicaid changes—millions could lose coverage. Learn how this impacts the hydrocephalus community and what’s next in the Senate.
Billy Joel’s Diagnosis of Normal Pressure Hydrocephalus
The Hydrocephalus Association extends its heartfelt support to Billy Joel and his family following his recent announcement of a diagnosis of Normal Pressure Hydrocephalus (NPH). We commend Mr. Joel for his courage in sharing his health journey, which brings much-needed awareness to this often misunderstood and underdiagnosed condition.
Medicaid Impact of U.S. House Reconciliation Package on People with Hydrocephalus
Learn how proposed federal Medicaid changes could affect people with hydrocephalus, including burdensome administrative requirements, cuts to vital health services, home care, and coverage for medical equipment.
Celebrating Neuroscience Nurses: Unsung Heroes of Neuro Care
Neuroscience nurses are the heart of neuro care. During Neuroscience Nurses Week, we honor their vital role in caring for brain and spinal condition patients.
Neuropsychology 101: Understanding Cognitive Function in Hydrocephalus
Learn how neuropsychology helps identify and manage cognitive symptoms in hydrocephalus—and how research is advancing care and quality of life.
The Hydrocephalus Scoop on Capitol Hill — April 2025
Congress has returned to Capitol Hill following Easter recess and is beginning the reconciliation process for a major legislative package. Big decisions are being made — and we have everything you need to know.
Assessing Recent HHS Reductions in Force (RIF) Layoffs and Their Impact on the Hydrocephalus Community
Mass layoffs at HHS are disrupting key health agencies like the FDA, CDC, NIH, and ACL—jeopardizing research, care, and innovation for the hydrocephalus community. These cuts threaten access to treatment, delay medical device approvals, and weaken support systems for patients nationwide.
When We Cut Research, We Cut Hope: The Human Cost of Medical Funding Cuts
When we cut research, we do not just slow progress. We delay relief. We postpone innovation. And, for many patients and families, we delay hope.
A Future Without Brain Surgery? The Push for Non-Invasive Therapies for Hydrocephalus
What if treating hydrocephalus didn’t require brain surgery? The Hydrocephalus Association (HA) is working to turn this vision into reality!
The Scoop from Capitol Hill – March 2025
Get the latest federal updates on hydrocephalus research, advocacy, and policy changes. Learn how you can take action to protect critical funding and healthcare access!
The Latest Research on Shunt Occlusion
Understanding the cause of occluded catheters is key to improving shunt systems and brings hope that future designs will offer more reliable treatments, improving the quality of life for individuals with hydrocephalus and reducing the need for frequent surgeries.