brain surgery

Summer camp for special needs kids

Splash Into Summer Fun with Summer Camp

Summer is right around the corner. Where will you child go to summer camp this year? A young adult from our community offers some insight and tips.

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Taurean Nixon

Superbowl Champ to Keynote Hydrocephalus Conference

Mr. Taurean Nixon of the Super Bowl Champion Denver Broncos will serve as the Inspirational Keynote Speaker at the National Conference on Hydrocephalus.

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Seattle Boy Proves to be a Fighter

Tristen Pierce was born with a rare birth defect called rhombencephalosynapsis and has a shunt as part of his treatment plan. Despite numerous challenges, Tristen has proved to be a fighter.

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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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Dallas Hydrocephalus WALK Family

Hawk and Why I WALK

A member of the hydrocephalus community reflects on the birth of his son with hydrocephalus and how it has affected his life.

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National Hydrocephalus Conference

Conference Registration is OPEN!

Registration for our 14th National Conference on Hydrocephalus is OPEN! Join us in Minneapolis, Minnesota, June 16 – 19, 2016.

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10 Reasons to Attend Conference!

Our biennial conference is a cornerstone of our commitment to serving our community. You don’t *need* a reason to attend conference but here are some good ones!

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Head with brain shunt

Term ‘Water Head’ Causes Hydrocephalus Community to Take Notice

NBC’s Saturday Night Live Weekend Update uses ‘water head,’ a forgotten derogatory term describing individuals with hydrocephalus.

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Young Man Recalls the Story of his Lifesaving Surgery

A young man reminisces about his surgery from ten years ago. He had had a tumor that brought upon hydrocephalus.

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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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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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Married to hydrocephalus

Building Our Life Together

In a heartwarming blog, Gayle openly shares the thoughts and emotions she experienced as she learned about the reality of loving a man with 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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Niagara Falls and the Peace Bridge Lit Blue for Hydrocephalus Awareness

  These two historic landmarks will be illuminated blue to commemorate Hydrocephalus Awareness Month 2015. Bethesda, MD | September 17, 2015 Niagara Falls and the Peace Bridge connecting the United States to Canada will be blue in honor of Hydrocephalus Awareness Month on the evening of Friday, September 18th. The lighting of these historic landmarks […]

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Identifying Best Candidates For Spina Bifida In-Utero Surgery

A new study found that fetuses with enlarged brain ventricles are more likely to get a second surgery after birth.

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A True Champion

Cohyn Wells, who is nine years old and lives with spina bifida, hydrocephalus and Chiari malformation, has been named Champion Child for the Children’s Hospital Foundation.

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lymphatic vessels in the brain

New Discovery Makes Researchers Rethink CSF Absorption

The discovery of lymphatic vessels in the brain creates a new focus for researches looking for non-invasive treatments for hydrocephalus.

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Hydrocephalus Infographic

Hydrocephalus Awareness Infographic

Raise hydrocephalus awareness by sharing this infographic!

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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 Association Scholarships

Congratulations to Our 2015 Scholarship Recipients!

We are pleased to announce our 2015 Hydrocephalus Association Scholarship Recipients!

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The Hidden Treasure of a Community Yard Sale

For the last 4 years, Wichita families have all donated yard sale items to support one little boy born with hydrocephalus.

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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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Hydrocephalus Association Conference

The Patient Voice in Hydrocephalus Research Studies

Our Patient Partner Committees provide the patient perspective throughout the duration of a research study, making sure the patient voice is at the table.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

The First Year of College: An Honest Look at My Experience

Teens Take Charge Mentor Task Force Member, Madeleine Darowiche, shares the highlights and challenges of her first year away from home at college.

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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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Dan Kricke, living with hydrocephalus

Realizing I Had Hydrocephalus

Dan Kricke talks about the first time he realized he had hydrocephalus when he was 5 and the various emotions he had along the way to adulthood.

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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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Dan Kricke, living with hydrocephalus

Telling My Story

Meet Dan, a new guest blogger lending his voice to our adult hydrocephalus community. We are excited for Dan to share different aspects of his journey each month.

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Pediatric Hydrocephalus study on shunt entry points

HCRN Study Begins Enrolling Pediatric Patients

The Hydrocephalus Clinical Research Network begins enrolling patients in a new study that examines the best placement for a shunt in infants and children.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Sharing about your Hydrocephalus with College Roommates and Friends – When is the Right Time?

In her monthly blog, Madeleine shares her experience of telling her roommates and friends in college about living with hydrocephalus.

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The College Adventure – 8 Lessons from My First Semester

Upon completing her first semester at college, TTC Blogger, Madeleine, shares advice about strategies that helped her have a positive college experience.

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Girl with hydrocephalus and Miss Tennessee

A Gift of Hope for Princess Ema

My family is going into this holiday season a bit more hopeful because of the great research progress that has already been made through thoughtful donations from individuals like you.

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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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Austin’s Season for Caring includes a Special Hydrocephalus Family

The Reyes family shares a heartwarming series of family photos with The Austin-Statesman, highlighting them as one of this year’s recipient’s of the Statesman’s Season fro Caring program.

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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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Going Beyond Your Comfort Zone – A Pathway to Confidence

In her October Teens Take Charge Blog, Madeleine Darowiche shares about a leadership retreat she attended and the lessons in courage and teamwork she learned.

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Chattanooga Mom on a Mission

Chara McLaughen, our Hydrocephalus Association Chattanooga WALK Chair, is on a mission to educate the public about hydrocephalus. She and her daughter Ema are interviewed by WRCB TV’s Latrice Curry about their journey with the condition and the upcoming WALK to raise funds to find a cure.

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Married to Hydrocephalus

“When I first met my wife, Jennifer, I had no idea what hydrocephalus was…” In an open, heartfelt blog, Andrew shares a husband’s journey with hydrocephalus.

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National Hydrocephalus Conference 2014

13th National Conference on Hydrocephalus: Highlights

At our 13th National Conference on Hydrocephalus in Portland, OR, July 9-11, 2014, we gathered to re-establish our sense of community and educate ourselves about hydrocephalus. Take a peek at our conference highlights!

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