NPH Blog

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!

CONTINUE READING

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.

CONTINUE READING
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.

CONTINUE READING
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.

CONTINUE READING

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.

CONTINUE READING
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.

CONTINUE READING

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.

CONTINUE READING

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.

CONTINUE READING

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

CONTINUE READING

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 Irvine Marriott in Orange County, California. Book your hotel!

CONTINUE READING

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.

CONTINUE READING

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. 

CONTINUE READING
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.

CONTINUE READING

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!

CONTINUE READING

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

CONTINUE READING

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.

CONTINUE READING

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.

CONTINUE READING

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.

CONTINUE READING

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!

CONTINUE READING

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!

CONTINUE READING

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.

CONTINUE READING

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.

CONTINUE READING

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.

CONTINUE READING

CSF Shunt Entry Site Trial

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

CONTINUE READING
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?

CONTINUE READING
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.

CONTINUE READING

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.

CONTINUE READING

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.

CONTINUE READING

Student Spotlight: Jamie Wright Advocates For Hydrocephalus Awareness

Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.

CONTINUE READING

Update on Obamacare

Congressional leaders are moving to repeal Obamacare per the campaign promise of President-elect Donald Trump. Here is an update on moves to date.

CONTINUE READING
Staff of the Hydrocephalus Association

2016 Year-In-Review

As we close out yet another banner year, we are grateful for all that we have been able to achieve through the support of our caring community.

CONTINUE READING
The Mighty

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership with The Mighty where stories of individuals living with hydrocephalus will be featured.

CONTINUE READING
NPH

Like Father, Like Son: An NPH Journey

One man watched his father decline into a state of confusion until diagnosed with Normal Pressure Hydrocephalus. Then he found himself traveling the same road.

CONTINUE READING
Hydrocephalus GivingTuesday Challenge

Historic #GivingTuesday for Hydrocephalus!

We have the chance to raise $80K in one day to support hydrocephalus research as well as programs and resources to support individuals and their families. #GivingTuesday is BIG this year!

CONTINUE READING
Hydrocephalus Action Network

Day of Action. Support the 21st Century Cures Act! #CuresNOW

Support 21st Century Cures Act (Cures), a bill that could change the lives of many patients by providing funding for medical research. Urge Congress to pass the Cures Act before the end of this year!

CONTINUE READING
Hydrocephalus Action Network

Election 2016: What Does this Mean for the Hydrocephalus Community?

The incoming Administration and Congressional Members will take office with new policy priorities. On healthcare, some will remain the same, while others will change.

CONTINUE READING
Election

The Candidates on Healthcare

It is important to know before you vote what each candidate’s position is on healthcare and how it will impact you and your family managing hydrocephalus.

CONTINUE READING
Hydrocephalus Association Education Days

Hydrocephalus Education Days Provide Connections

Complementing our National Conference on Hydrocephalus, we are proud to host Hydrocephalus Education Days in select cities across the USA.

CONTINUE READING
Rare Artist Contest

Rare Artist Contest Now Accepting Submissions!

Enter the 8th annual Rare Artist contest and be eligible to win a trip to Washington, DC, to see your artwork displayed on Capitol Hill.

CONTINUE READING
Neuroscience Nurse

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!

CONTINUE READING
Change this in Theme Options
Change this in Theme Options