NPH Blog

Eau Claire Woman Shares Story In Hopes of Educating Others

After struggling with a declining interest in activities that she loved, decreasing mobility, and urinary incontinence, Dorothy Sorlie was finally diagnosed with Normal Pressure Hydrocephalus (NPH). A recent article in the Leader-Telegram detailed her journey.

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Watch Recorded Sessions from HA CONNECT 2018!

Miss the 15th National Conference on Hydrocephalus, HA CONNECT? Recordings of the 19 live streamed sessions are now available! Register as a virtual attendee for $20 to access the 19 recordings!

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Hydrocephalus Research Webinar

FREE WEBINAR: New Results on the Genetic Causes of Congenital Hydrocephalus

Please join the Hydrocephalus Association and Dr. Kristopher Kahle, Assistant Professor of Neurosurgery and Pediatrics at Yale School of Medicine, to learn about the new results from his research on genetic causes of congenital (developmental) hydrocephalus.

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Join us as we say #NOMOREBS!

Brain surgery should not be the only treatment option for the over 1 million Americans living with hydrocephalus. Join the Hydrocephalus Association is standing up to say #NOMOREBS – #NOMOREBRAINSURGERIES – with our national awareness campaign.

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Conference Hotel SOLD OUT! New Hotel Announced.

Due to the great number of conference attendees already registered for HA CONNECT this year, hotel rooms at the conference hotel are now completely sold out.

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Countdown to Conference: Tips on making it affordable!

The 15th National Conference on Hydrocephalus, HACONNECT, takes place June 28-30, 2018 in Orange County, California. Join us! Here are tips to help make it affordable.

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Hydrocephalus Action Network

It’s Time to #StopTheCap on PT, OT and Speech Language Services

There is a $2,010 cap on PT, OT, and/or Speech therapy services for patients on Medicare. After they hit $2,010, Medicare will no longer cover the therapy costs and many patients cannot continue with their needed therapies. We can #StopTheCap.

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Announcing National Conference Financial Aid

The Hydrocephalus Association is pleased to announce a financial aid program for the 15th National Conference on Hydrocephalus which will be held in Orange County, California June 28-30, 2018.

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Conference Program Available!

The Hydrocephalus Association staff and the program planning committee are happy to announce the release of our conference agenda for the 15th National Conference on Hydrocephalus, HACONNECT!

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Conference Registration is OPEN!

Registration for our 15th National Conference on Hydrocephalus is OPEN! Join us in Orange County, California, June 28 – 30, 2018.

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Patient Research Studies on Hydrocephalus

Tools To Help Patients With Hydrocephalus Make Informed Decisions About Their Health Care.

Dr. Thomas Beez and Dr. Hans-Jakob Steiger from the Heinrich-Heine-University in Düsseldorf, Germany have developed a new health care quality metric for shunt surgeries.

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Department of Defense Funds Two Research Studies on Hydrocephalus

Department of Defense funding of two hydrocephalus researchers reflects the success of the Hydrocephalus Association’s Research and Advocacy Initiatives.

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Tax Issues that Impact Our Community

Patient and charitable groups are fighting on many fronts to make necessary changes to the Tax Reform bill. Learn about the issues that impact our community and take action today!

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Adult Hydrocephalus Clinical Research Network (AHCRN) Update

Last week the Adult Hydrocephalus Clinical Research Network (AHCRN) met in Salt Lake City, Utah to discuss the progress and next steps for the network.

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Hydrocephalus Action Network

TAKE ACTION! Help Veterans Receive Telehealth Benefits

Take action today to support moves in the Senate and the House to support telehealth medicine for our veterans.

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Hydrocephalus Action Network

Tax Overhaul may Affect Charitable Giving and Non-Profits

Congressional efforts to overhaul the tax code could have major implications for charitable giving and non-profit budgets and could lead to reductions in research, advocacy, outreach, and other services.

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Interview with Olivia Bell, Cognitive Therapist – Part 2

This part of the interview touches on neuropsychology, debunking some misunderstandings about cognitive therapy (CT), some advice Olivia had for NPH patients and spreading the word about CT.

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Hydrocephalus Action Network

A Possible Cut in Hydrocephalus Research Funding from Capitol Hill

Congress is currently debating a bill that could have major implications for hydrocephalus research through the Department of Defense CDMRP program.

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Get to Know Our Conference Host City

For those that are traveling we hope you will take a couple days to explore this wonderful host city for our conference and enjoy the world-famous theme parks and, stunning beaches, designer shopping, delightful fairs and so much more.

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The Vision to End Hydrocephalus after a Brain Bleed

The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

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Meet our Conference Team!

HA is pleased to announce some of the brightest minds in the field who are generously offering their time, expertise and talent in planning the 15th National Conference on Hydrocephalus

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Book Your Hotel for Conference!

Housing is open for the National Conference on Hydrocephalus which will take place on June 28-30, 2018 at the Renaissance Newport Beach in Orange County, California. Book your hotel!

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New Theories in Posthemorrhagic Hydrocephalus

A recent study expands these results to posthemorrhagic hydrocephalus in premature infants. Please take a moment to read more about this important research.

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Interview with Olivia Bell, Cognitive Therapist – Part 1

This is the first part of Trish’s interview with cognitive therapist Olivia Bell. It covers who benefits from CT, how to find a therapist, and how to get the most out of the therapy appointments. 

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healthcare

Graham-Cassidy Healthcare Bill

Time to take action! Information on how the Graham-Cassidy bill will impact health services in your state and individuals with pre-existing conditions.

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Mary Decker Mentorship Award: Call for Nominations

Nominate a dedicated Neuroscience Nurse with demonstrated excellence in neurosurgery, specifically with hydrocephalus, for the Mary Decker Mentorship Award!

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How I decided to have shunt surgery

Trish was diagnosed with NPH in 2015 and had shunt surgery then. Thanks to the surgery and several kinds of therapy, Trish is now back to doing what she loves, including a killer step aerobics class at her gym and singing with her husband in a community chorus

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New Insights into Normal Pressure Hydrocephalus

A recently published study attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement.

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PT Tips for NPH Patients

By the time Trish was diagnosed with NPH and had shunt surgery, she had lost her ability to walk unaided, so her neurosurgeon gave her a prescription for physical therapy.

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Cognitive Therapy for NPH Patients

If you have Normal Pressure Hydrocephalus (NPH) you might find Cognitive Therapy useful. Trish Bogucki explains what it consists of and shares some tips for others who might be in the same boat she was in.

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2017 Every Member Campaign

Your membership support of HA helps newly diagnosed families across the nation who are seeking our support and encouragement.
Read how your membership gift is making an impact!

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The Hydrocephalus Association wants to THANK YOU!

By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!

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En Garde! The Sport of Fencing and Hydrocephalus

Jonathan, who lives with spina bifida and hydrocephalus, shares discovering fencing as a form of exercise and competition.

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Over 500 Adult Hydrocephalus Patients Enrolled in Registry

HA is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and NPH.

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Obamacare Remains the Law of the Land

After much debate and negotiations, the American Health Care Act was pulled from the House floor before a vote and the Affordable Care Act remained in place.

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CSF Shunt Entry Site Trial

The CSF Shunt Entry Site Trial has reached the halfway mark in patient enrollment – that is 224 patients enrolled!

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Jeff marathon runner hydrocephalus

Ever Wanted to Push Yourself to RUN?

Ever aspired to run a half or full marathon? Ever thought of running in honor of your loved one living with hydrocephalus? Do you have hydrocephalus and love to run?

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Medtronic StrataMR Shunt System

Medtronic Addresses FDA Recall for Strata™ II/Strata™ NSC and StrataMR™ valves

The FDA notification regarding Medtronic Strata shunts have led to a number of questions from patients. Here’s what you need to know.

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The Challenges of Transitioning to Adult Care

HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap.

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Tackling the Challenges of Transitioning from Pediatric to Adult Medical Care

The HA Transition Summit will discuss ways of improving the transition from pediatric to adult-centered medical care for patients with hydrocephalus.

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