Hydrocephalus Blog & Resources
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.
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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.
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Dereck’s Hydrocephalus Journey: Finding the Silver Lining
Discover how Dereck finds silver linings and strength in everyday moments while living with hydrocephalus and overcoming over 500 brain surgeries.
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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.
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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!
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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!
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Traveling with Hydrocephalus and Spina Bifida: Must-Know Tips
Traveling with hydrocephalus and spina bifida takes planning! Here are my tips for navigating air and train travel, accessibility, and accommodations.
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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.
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The Scoop from Capitol Hill – February 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.
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Funding Tips for HA CONNECT: Grants, Aid and Savings
Discover funding options to attend HA CONNECT! Explore financial aid, grants, and creative strategies to make conference participation more affordable.
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Medicaid Coverage is a Lifeline for Many Hydrocephalus Patients
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.
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Hydrocephalus Association Medical Advisory Board And Scientific Advisory Board Issue Response to Cuts to NIH Indirect Cost Payments
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%.
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