Parent Blog

Adult living with hydrocephalus

Finding that Perfect Fit

It was truly amazing to be surrounded by people who either have hydrocephalus themselves that know exactly what it’s like to live the way I live,

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Chicago Hydrocephalus Association WALK Chairs

Katie’s Top Ten Reasons You Should Attend Conference

What would it look like if we all worked together as one voice and made hydrocephalus a word that people know and are ultimately interested in curing?

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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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Twins with hydrocephalus

Why I WALK to Raise Hydrocephalus Awareness

“…the likelihood of fraternal twins being born with the same variation of hydrocephalus was extremely rare.” One dad shares his story and the inspiration behind raising awareness.

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Hydrocephalus Action Network

It’s Time for a National Hydrocephalus Registry

The Advancing Research for Hydrocephalus Act (H.R.2313) would establish a national hydrocephalus registry. It’s time to ask Congress to act.

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Dan Kricke, living with hydrocephalus

The Day-to-Day of Headaches and Hydrocephalus

Living with hydrocephalus means living with headaches. In his latest post, Dan discusses headaches, weather changes, and the importance of knowing your body.

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An Invisible Medical Condition and a Handicap Placard

Sometimes a disability is not readily visible. A mom shares her experience advocating for her daughter with hydrocephalus to a stranger in a parking lot.

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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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Hydrocephalus Action Network

Advocacy Webinar: What You Can Do to Increase Funding for Hydrocephalus Research

Join us for our advocacy webinar covering the Congressional appropriations process and what you can do to help protect medical research program funding.

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Young boy at Hydrocephalus WALK

Why We WALK – The Making of Will’s Warriors

Little Will has inspired a WALK team of 25+ to support HA and WALK for more research, better treatment options and more education about hydrocephalus.

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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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Adult living with hydrocephalus

Travelling a Parallel Path

Amy Booher reflects on her experience attending the National Conference on Hydrocephalus. She looks forward to speaking at this year’s conference in Minnesota.

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Bryant Williams, adult living with hydrocephalus

Overcoming Bullying through a Passion for Sports

Bryant found sports to help him get through being bullied because of his hydrocephalus. He challenges us to each find our own passion and let it grow our individual confidence and resilience.

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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 Scholarship

2016 Scholarship Cycle OPEN!

The Hydrocephalus Association (HA) proudly offers fourteen scholarships to young adults with hydrocephalus. The 2016 Scholarship cycle is now open. Apply today!

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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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Pediatric Hydrocephalus study on shunt entry points

Dr. William Whitehead Extolls Virtues of Patient Centeredness in Research

Dr. Whitehead shows the benefits of patient involvement in the research planning and information dissemination of the CSF Shunt Entry Site trail.

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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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Hydrocephalus Conference

Book Your Hotel for Conference!

Housing is open for the National Conference on Hydrocephalus June 16-19 in Minneapolis, Minnesota. Book your hotel!

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Diana Gray HA CEO

Diana Gray Announced as the New Chief Executive Officer

The Hydrocephalus Association (HA) is pleased to announce the appointment of Diana Gray as the new Chief Executive Officer (CEO).

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Hydrocephalus Action Network

It’s Time to Start Taking Action!

It’s time to start energizing our hydrocephalus grassroots network! Here are a few assignments for you to help make you a star advocate.

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Hydrocephalus Awareness Month 2015

Hydrocephalus Awareness Month 2015 is HERE!

September is Hydrocephalus Awareness Month! Here are 15 ways you can make an impact and raise awareness.

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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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x chromosome

Finding Our Way with L1CAM

The causes of hydrocephalus are varied, but one with a clear genetic linkage is X-linked hydrocephalus, a genetic disorder that occurs in about 1 of 30,000 births.

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Dan Kricke, living with hydrocephalus

Navigating Social Interactions Growing Up with Hydrocephalus

In Dan’s new blog, he talks about growing up with a chronic medical condition and navigating social interactions with his school peers.

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Shunt to treat hydrocephalus on glass model skull

INPUT NEEDED on Device to Detect CSF Build Up at Home

Two bioengineering students out of Rice University are working on a device that can be used by patients for at-home diagnosis of CSF buildup for hydrocephalus patients.

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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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Michelle Fernandez living with hydrocephalus

WNYT Albany Raises Hydrocephalus Awareness

Benita Zahn of WNYT-TV in Albany delivers a comprehensive news story on an incurable brain condition called hydrocephalus.

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Survey

How Can We Serve You Better?

We continually strive to provide the best support and education services, and most current, comprehensive information and resources to assist our community. Take a brief survey and help us develop programs and services to better fit your needs.

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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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Hydrocephalus Teen Webinar

Speak Up: Owning Your Condition Webinar Recording NOW Available!

Tess Jacobsen, presents tips, resources, and solutions on how to own your condition in this recent Webinar recording now available!

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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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Hydrocephalus Research Webinar Recording Available

The Next Generation of Hydrocephalus Researchers Webinar Recording NOW AVAILABLE

In this webinar, Dr. Yun Yung discusses his exciting new work focused on understanding and preventing post-hemorrhagic hydrocephalus. Recording now available!

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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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Hydrocephalus Research Webinar

Upcoming Webinar: The Next Generation of Hydrocephalus Researchers Part II

Next webinar: Optimizing the timing of interventions in neonatal hydrocephalus and new research on how brain cells react and recover under pressure.

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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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