shunt

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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2016 Innovator Award Announcement

The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.

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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.

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This #GivingTuesday was a HUGE success because of YOU!

Because of you and our generous donors that provided matching funds we were able to exceed our goal!

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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.

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So Many Reasons To Be Grateful

Olivia Maccoux shares her story and leads this year’s holiday drive to support the critical research work of the Hydrocephalus Association.

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What Can’t You Live Without?

Read Genesis Espaillat first-person account of life with hydrocephalus, which she wrote in honor of September being Hydrocephalus Awareness month.

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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.

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Hydrocephalus Association Scholarships

Announcing Our 2016 Hydrocephalus Association Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2016 Hydrocephalus Association Scholarship Recipients.

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Teen with Hydrocephalus

Living Hydro: One Family’s Journey

Our Charlotte Hydrocephalus WALK Chair shares her daughter’s journey with hydrocephalus.

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Desiree Dyson

Miss Tennessee High School America Joins With HA

Miss Tennessee High School America joins HA to bring awareness for those living with hydrocephalus in the state of Tennessee and across the country.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Living with Anxiety & Hydrocephalus, Part 3

I was asked a question I had never been asked in a job interview, and I thought it was a great question. The question was: “What motivates you?”

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St. Louis Doctors Among Few Performing ETVs

Because of the country’s high numbers of children with hydrocephalus, doctors, including Dr. David Limbrick of St. Louis Children’s Hospital, traveled to Uganda so they could learn the technique. Two years ago, Limbrick traveled 8,000 miles to the East African country for more than a week of intensive training.

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Young Woman Prepares for 121st Surgery

A Minnesota 20-year-old will undergo here 121st surgery to replace an infected shunt.

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National Hydrocephalus Conference

Countdown to Conference: Tips on making it affordable!

The National Conference on Hydrocephalus takes place June 16 – 19th in Minneapolis, Minnesota. Join us! Here are tips to help make it affordable.

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How Roald Dahl Revolutionized Shunt Design

When his son got hydrocephalus, the famous Charlie and the Chocolate Factory author decided to design a new and better shunt for him.

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14th National Conference on Hydrocephalus

LEARN MORE: National Conference on Hydrocephalus

LEARN MORE: The 14th National Conference on Hydrocephalus will take place in Minneapolis, Minnesota, on June 16-19, 2016!

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Living with Anxiety and Hydrocephalus

Madeleine shares her experience of living with the challenges of anxiety and hydrocephalus.

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Dara Hydrocephalus Teens Take Charge Mentor

College Bound? Tips on the College Application Process

Hydrocephalus Teens Take Charge Mentor Task Force member offers advice on how to tackle the college application process and shares insight from her personal experience.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Learning from Experience – A Reflection on Self-Acceptance as a Starting Point for Growth

TTC Blogger Madeleine Darowiche shares her insights about the challenge of accepting yourself and where you are today, in order to grow tomorrow.

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Hydrocephalus Patient Conference

MINNEAPOLIS: We are on our way! 2016 Hydrocephalus Conference

SAVE THE DATE: The 14th National Conference on Hydrocephalus will take place in Minneapolis, Minnesota, on June 16-19, 2016! Our patient-centered conferences empower all of us to understand, seek out and put into place the care, programs and services that will meet our needs now and well into the future.

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Teen with money

Money, Money, Money – Helping Out Without Emptying Wallets

TTC Member Megan Rivkin challenges young people to get involved in advocating and fundraising to increase research efforts and public awareness of hydrocephalus.

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Bryant Williams, adult living with hydrocephalus

Learning to Date Me

Bryant, our new guest blogger, shares openly about the unconditional support of his fiancee and resilience of their relationship as he lives with hydrocephalus.

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Hydrocephalus mother video blog

Through a Mother’s Eyes: Is it the Shunt or Just a Temperature?

Is my child’s shunt in failure or is it just a temperature? In her video blog, Debby gives tips on how to figure it out and in trusting your “shunt sense.”

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American Academy of Neurology Annual Meeting

Happening NOW! American Academy of Neurology Annual Meeting in Washington DC

HA represents the patient voice at the American Academy of Neurology Annual Meeting in Washington DC.

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Teens Take Charge Guest Blogger

One Big Family

Life at 14 can be tough, but Jillian’s determined to live FULLY and overcome any challenge presented to her by hydrocephalus or just being a teen.

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Hydrocephalus Teens Take Charge Guest Blogger

Meet Emily Lucht . . . Fellow Traveler on the Teen Hydrocephalus Journey

Meet our newest TTC Blogger Emily Lucht! She shares her journey’s extra baggage. Read what she means and let’s start a conversation using #TalkTTC.

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HA WALKS – Making New Friends & Raising Awareness

In her monthly blog, TTC member Madeleine shares how participating in HA WALKs in Florida helps her find new friends, raise awareness and funds, and have fun too!

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Boozle Bear, hydrocephalus bear

Meet Boozle Bear! An Educational Tool Handmade by Volunteers

Boozle bear, who has hydrocephalus, is an educational tool used to demonstrate how shunting works. Read about this amazing bear and how you can help make him!

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Hydrocephalus Association Teens Take Charge Guest Blogger

Don’t Let Bullies Bring You Down – Stand Up!

October is National Bullying Prevention Month. TTC Blogger Henry Guion writes about his experience with bullies and offers suggestions of how to deal with difficult people.

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Hydrocephalus Teens Take Charge Scholarships

Congratulations 2014 TTC Scholarship Recipients

The Hydrocephalus Association (HA) is pleased and honored to announce our 2014 Hydrocephalus Association Teens Take Charge Scholarship Recipients.

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Update on Baby Roona Begum of India

Update on the infant from India who brought international attention to hydrocephalus when her head grew three times its normal size.

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New Book on NPH Sights Considerable Savings with Proper Diagnosis

Dr. Daniele Rigamonte, director of the Department of Neurosurgery’s stereotactic radiosurgery at Johns Hopkins, shares his vast knowledge of Normal Pressure Hydrocephalus in a newly published book, “Adult Hydrocephalus.” In the book he sites a 2007 study he led that highlights the potential national cost savings to proper timely diagnosis of NPH by the medical community.

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A Home Filled with Love

The Sheboyganpress.com shares the story of the Harlin family who recently adopted two children from the Ukraine, one who has cerebral palsy and hydrocephalus, among other conditions.

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Global Partners Unite Around Spina Bifida and Hydrocephalus

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) in partnership with Boston Children’s and the International Federation for Spina Bifida and Hydrocephalus (IF) co-hosted the Spina Bifida and Hydrocephalus Partner Engagement Meeting April 22, 2014. The meeting marked the first ever discussion among the 21 organizations in attendance to advance spina bifida and hydrocephalus prevention and care. The Hydrocephalus Association was in attendance.

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Dealing with Fear and Uncertainty

In this installment of the Hydrocephalus Association’s video blog series, Through a Mother’s Eye’s, Debby Buffa addresses the question of how to deal with the fear and uncertainty experienced by parents and caregivers supporting a loved one with hydrocephalus.

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National Hydrocephalus Conference 2014

2014 Conference – Parent Track Highlights

The National Conference on Hydrocephalus offers parents an opportunity to connect with other parents, speak directly with experts on various topics about raising a child with hydrocephalus – social, emotional, educational, financial, and medical – and watch their children interact with other children living with hydrocephalus. Join us in Portland, Oregon, July 9-11, 2014.

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Dawn Mancuso, CEO, Hydrocephalus Association

From the CEO: Sowing the Seeds of Exploration into Hydrocephalus

In her monthly blog, Hydrocephalus Association CEO Dawn Mancuso shares insights into our recent Research Workshop, “Biomarkers in Hydrocephalus,” held in St. Louis, MO, in late April, which brought together over 30 of the world’s leading experts in biomarkers.

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National Hydrocephalus Conference 2014

2014 Conference Update – Teen Track Highlights

Highlighting the Hydrocephalus Association’s Teen track for the upcoming 13th National Conference on Hydrocephalus, July 9-11, 2014, in Portland, OR.

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National Hydrocephalus Conference 2014

2014 Conference Update – NPH Track Highlights

By Jennifer Bechard Johnson, Education Manager There is something for everyone at our 13th National Conference on Hydrocephalus. We are happy to announce that this year’s conference will have a special track of programming dedicated to meeting the needs of the normal pressure hydrocephalus (NPH) population. Here is a preview of what our conference has to […]

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