From the Association

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.

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.

Hydrocephalus Association Publishes Key Neuropsychology and Cognitive Research Priorities

January 17, 2025

The Hydrocephalus Association (HA) is excited to announce the publication of our Research Priorities in Neuropsychology and Cognition in the Journal of Fluids and Barriers of the CNS.

Looking Back at Key Accomplishments in 2024

December 23, 2024

2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners in Congress were some of the strongest contributors for our mission as well.

U.S. House Foreign Affairs Committee Holds Hearing on the Challenges Affecting Global Hydrocephalus Patients

December 19, 2024

The House Foreign Affairs Subcommittee’s November 20th hearing discussed global brain health challenges, focusing on hydrocephalus in developing countries. Experts, including Dr. Benjamin Warf of NeuroKids, highlighted the need for better care and training to support patients, particularly in low-resource regions. The hearing also addressed the lack of USAID programs for brain health and the importance of international aid for hydrocephalus treatment.

Announcing the 2024 Hydrocephalus Association Innovator Award Recipients

December 5, 2024

The Hydrocephalus Association (HA) is proud to announce the recipients of the 2024 Hydrocephalus Association Innovator Awards. These awards provide critical seed funding to researchers pushing the boundaries of hydrocephalus research and treatment.

The Exclusive Hydrocephalus Scoop on the Hill | Key Updates for November 2024

December 3, 2024

Washington, D.C. is buzzing as Congress pushes key legislation and the Hydrocephalus Association partners with advocates to drive priorities forward. With government funding set to expire on December 20th, a short-term resolution is likely. The new presidential administration and Congress will bring major changes, especially in the first 100 days. Stay tuned!

Announcing the 2024 Hydrocephalus Association Innovator Award Recipients

November 26, 2024

The Innovator Awards fund groundbreaking projects advancing hydrocephalus research, driving innovation, and improving outcomes for those impacted worldwide.

Breaking Myths About Hydrocephalus: What’s Fact and What’s Fiction?

November 25, 2024

Hydrocephalus is often misunderstood, with myths overshadowing the realities of this invisible condition. This blog breaks down common misconceptions, highlights the facts, and sheds light on the challenges faced by those living with hydrocephalus, proving that what you see on the outside doesn’t always reflect the struggles within.

Announcing our 2024 Hydrocephalus Association Scholarship Recipients!

November 18, 2024

The Hydrocephalus Association (HA) is pleased and honored to announce our 2024 Hydrocephalus Association Scholarship Recipients.

Traumatic Brain Injuries Delegated as Chronic Condition by Medicare

November 13, 2024

In a monumental step for Americans living with traumatic brain injury (TBI), the Centers for Medicare and Medicaid (CMS) recently added TBI as a qualifying condition for Medicare Advantage Chronic Special Needs Plans (C-SNP).

What Hydrocephalus Patients Should Know for Medicare Open Enrollment

November 13, 2024

As Medicare beneficiaries navigate through the open enrollment period, it is crucial for them to understand the surplus of 2025 changes as they choose a new Medicare insurance plan. The Medicare Open Enrollment Period began on October 15 and will close on December 7th. 

Get the Exclusive Hydrocephalus Scoop on Capitol Hill for October 2024

October 28, 2024

As healthcare advocates race to secure passage of critical bills before the end of the 118th Congress, the Hydrocephalus Association (HA) is joining forces on Capitol Hill, advocating for vital legislation to support Medicare coverage for breakthrough devices, strengthen the medical workforce, ensure fair billing practices, fund brain research, and raise hydrocephalus awareness.