From the Association

Explainer of the President’s FY 2026 HHS Budget Proposal

June 5, 2025

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

June 2, 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

May 23, 2025

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

May 19, 2025

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

May 9, 2025

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

April 30, 2025

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

April 28, 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

April 15, 2025

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

April 4, 2025

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

April 1, 2025

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

April 1, 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

March 13, 2025

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.

The Scoop from Capitol Hill – February 2025

March 3, 2025

House and Senate Republicans have been focused on passing the Administration’s priorities. The Senate approved a billion-dollar budget framework focusing on defense and border enforcement funding. On the other side of the Capitol, the House recently passed its own budget framework. This package is wider in scope and costs.

Funding Tips for HA CONNECT: Grants, Aid and Savings

February 26, 2025

Discover funding options to attend HA CONNECT! Explore financial aid, grants, and creative strategies to make conference participation more affordable.

Medicaid Coverage is a Lifeline for Many Hydrocephalus Patients

February 25, 2025

Affordable healthcare insurance is a crucial asset for the hydrocephalus community. As most patients in the community understand; not having affordable access to care can be life-threatening.

Hydrocephalus Association Medical Advisory Board And Scientific Advisory Board Issue Response to Cuts to NIH Indirect Cost Payments

February 15, 2025

The Hydrocephalus Association Medical Advisory Board and Scientific Advisory Board urge the Administration to rescind the directive for the National Institutes of Health (NIH) to cap indirect costs for research funding at 15%.

Hydrocephalus Community Advocates for Change on Capitol Hill

February 10, 2025

The Hydrocephalus Association brought over 50 key leaders from the hydrocephalus community to advocate for change by meeting with their congressional representatives on Capitol Hill.

The January Hydrocephalus Scoop on the Hill

February 5, 2025

The 119th Congress is in full swing. Republican leadership is zoned in on crafting a large legislative package that includes key priorities around tax, immigration, and budgetary issues. The package will likely go through a process called reconciliation, which allows certain budget-related bills to bypass the 60-vote filibuster in the Senate.

Exploring Emerging Technology in Smart Shunts

January 30, 2025

To address the challenges of traditional shunt systems, scientists are developing innovative devices known as “smart shunts”. These emerging technologies aim to make hydrocephalus management easier.

Hydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research

January 28, 2025

The Trump Administration recently issued Executive Orders that could have long-term consequences for hydrocephalus research, potentially impacting the health of hydrocephalus patients, particularly children.