congenital hydrocephalus

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

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Genetic Mutations and their Role in Congenital Hydrocephalus

Hydrocephalus has been shown to have multiple causes, including numerous genetic origins. Dr. Jenna Koschnitzky explores genetic mutations in a three blog series.

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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 Teens Take Charge Scholarships

Announcing Our 2016 Hydrocephalus Association Teens Take Charge Scholarship Recipients!

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

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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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Hydrocephalus Clinical Research Network

Happy 10th Anniversary to the Hydrocephalus Clinical Research Network!

The Hydrocephalus Clinical Research Network celebrates 10 years of pursuing impactful research into childhood hydrocephalus.

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Chicago WALK Chair featured on MIX Matters

Chicago radio station 101.9FM The Mix featured Katie Cook, our Chicago Hydrocephalus Association WALK Chair, on their weekly radio show “MIX Matters” with Susan Wiencek.

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Adults living with hydrocephalus

A National Registry Would Shed Life-Saving Light on Hydrocephalus

Support is needed for research initiatives that aim to better understand the distribution and determinants of [hydrocephalus] and to develop new therapies and other interventions.

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Hydrocephalus Action Network

This August It’s All About #CuresNOW!

Have you joined the thousands of advocates around the country speaking out for Hydrocephalus treatments and cures? If not, join the #CuresNOW campaign today!

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Premature Baby Posthemorragic hydrocephalus

HA Convenes the First International Workshop on Posthemorrhagic Hydrocephalus

Workshop on Posthemorrhagic Hydrocephalus (PHH) proves the potential for researchers to alter the course of the development of hydrocephalus and its long-term outcomes.

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qFamily with daughter with hydrocephalus

Hydrocephalus Receives National Attention

TLC aired a feature piece on ‪hydrocephalus that featured three families – Roona in India, Lyndos in Uganda, and Parker in Oklahoma.

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A Business with Hydrocephalus as Part of Its Mission

Jason Spears started his hard cider company with a mission. At the heart of that mission is his daughter, Lucy, living with hydrocephalus.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Living with Anxiety and Hydrocephalus Part 4

I rarely spoke a word during my first year in college. I was so anxious. It seemed like everything that could go wrong, definitely did…Madeleine continues her blog series.

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Canada Embraces New Brain Procedure for Hydrocephalus

Dr. Jay Riva-Cambrin of Alberta Children’s Hospital is featured in Calgary Metro for his use of the Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization in infants born with 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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Seattle area-based Cider Company Partners with National Patient Advocacy Organization to Raise Awareness for Incurable Brain Condition

Locust Cider founder, Jason Spears, announces a partnership with the Hydrocephalus Association to raise much needed awareness and funds for education and research.

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Inspiring 26 Miles: A Posse of Penguins Take On the LA Marathon

Inspired by her cousin, Jessica, and her journey with hydrocephalus, Katie, along with other family members, set out to run the LA Marathon in Jessica’s honor.

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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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Hydrocephalus Mom

That Feeling of Helplessness

One mom openly and honestly shares the many emotions that challenge parents of children living with hydrocephalus.

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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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Hydrocephalus Surgery Team Haiti

Mixed Emotions: Heartbreak

Jamie Wright, Houston Community Network leader, went to Haiti with a pediatric neurosurgery team from Children’s Memorial Hermann Hospital. This is her experience.

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Hydrocephalus in Haiti

Mixed Emotions: Joy

Jamie Wright, Houston Community Network leader, went to Haiti with a pediatric neurosurgery team from Children’s Memorial Hermann Hospital. This is her experience.

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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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Pope Kisses Young Boy with Hydrocephalus

ABC 13 Eyewitness News in Philadelphia reports on the Pope’s Philadelphia visit where Matthew Campuzano, a young boy born with hydrocephalus, received a special greeting.

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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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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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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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Busy Haiti Street

Mixed Emotions: Nerves

Jamie Wright, Houston Community Network leader, went to Haiti with a pediatric neurosurgery team from Children’s Memorial Hermann Hospital. This is her experience.

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Emily Fudge and Pip Marks, Hydrocephalus Association

Moms on a Mission: The Trailblazers

It is only fitting that we close out our Mother’s Day celebration with the mothers that started it all. Our Trailblazers – Emily Fudge, Cynthia Solomon, Pip Marks.

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BLUE at the DC Hydrocephalus Association WALK

Moms on a Mission: April Christian, Champion

Our mom and (S)HEro #6 April Christian continues our Mother’s Day profiles of 7 moms on a mission within our #hydrocephalus community.

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Moms on a Mission: Jennifer Pope, Power Forward 

Our mom and (S)HEro #5 Jennifer Pope continues our Mother’s Day profiles of 7 moms on a mission within our #hydrocephalus community.

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Moms on a MISSION: Chara McLaughen, Promoter

Tireless organizer and promoter describe Mom #4 – Chara McLaughen. Our Mother’s Day profiles of 7 (S)HEroes of our #hydrocephalus community continues.

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Randy and Jan Kell

Moms on a MISSION: Jan Kell, Connector

Bringing people together. That’s Mom #3 – Jan Kell, The Connector. Our profiles of 7 (S)HEroes of our #hydrocephalus community continues. Happy Mother’s Day!

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Susan Fiorella, hydrocephalus advocate, with her son.

Moms on a MISSION: Susan Fiorella, Advocate

Mom #2 – Susan Fiorella, The Advocate. Join us as we profile 7 (S)HEroes of our #hydrocephalus community – MOMS ON A MISSION! Happy Mother’s Day!

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Craig and Vicki Brown and family

Moms on a MISSION: Vicki Brown, Visionary

One week of celebrating our MOMS ON A MISSION! Mom #1 – Vicki Brown, The Visionary. Happy Mother’s Day!

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Hydrocephalus Clinical Research Network

Hydrocephalus Clinical Research Network Meets in Toronto

Principal investigators from the Hydrocephalus Clinical Research Network (HCRN) are meeting today and tomorrow at the Hospital for Sick Children in Toronto, Ontario.

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