shunt revision

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

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.

CONTINUE READING
New York City Hydrocephalus WALK

HA WALK Takes a Bite Out of the Big Apple!

With the addition of our inaugural New York City Hydrocephalus WALK, the Hydrocephalus Association now hosts WALKS in all major cities in the United States.

CONTINUE READING

Minnesota Teen WALKS for Hope

Natalie​ offers an incredibly informative interview with Big Fish Lifestyle about living with hydrocephalus as a teen. This is a MUST READ!

CONTINUE READING

The Varying Impact of Hydrocephalus

Sarah Ann and Mikell highlight how hydrocephalus can impact each of us differently as they raise awareness on ABC4 Utah and invite Utahns to participate in the 9th Annual Salt Lake City Hydrocephalus WALK.

CONTINUE READING
Young boys with hydrocephalus

Hydrocephalus Mom Fights to Change Pennsylvania Truancy Law

The Mantheiy family is fighting to change truancy law in Pennsylvania for chronically ill children, like their son who has hydrocephalus.

CONTINUE READING
Alcyone Lifesciences Inc

Device Currently in Clinical Trials May Delay the Need for Emergency Shunt Surgery

ReFlow System by Alcyone Lifesciences, Inc., currently in clinical trials, may prevent the need for an immediate emergency shunt revision for patients with hydrocephalus.

CONTINUE READING
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.

CONTINUE READING

New Orleans Beauty Brand Benefits Toddler with Hydrocephalus

Ashley Sievert , a New Orleans makeup artist and beauty brand owner, will hold a benefit that will raise funds for a young Haitian=born toddler living with her adopted mother in the U.S.

CONTINUE READING

New Catheter for Hydrocephalus Shunt Seeking FDA Approval

The ReFlow shunt system from Alcyone Lifesciences is seeking FDA approval for the commercial resale after being successfully implanted in 4 patients in an ongoing study at Boston Children’s Hospital.

CONTINUE READING

Olympic Gymnast Raises Hydrocephalus Awareness

Olympic Gold medalist Shawn Johnson East supported a fundraiser in Pelham, Alabama, to support the construction of a new gym and to benefit the Hydrocephalus Association.

CONTINUE READING
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.

CONTINUE READING
Medtronic StrataMR Shunt System

FDA Clears MRI-Compatible Shunt System by Medtronic

The Food and Drug Administration cleared Medtronic’s new StrataMR™ valve and shunt system for use in the United States.

CONTINUE READING

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.

CONTINUE READING

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.

CONTINUE READING
Hydrocephalus Mom

That Feeling of Helplessness

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

CONTINUE READING
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.

CONTINUE READING
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.

CONTINUE READING
Adult Hydrocephalus Clinical Research Network

Next Steps for the Adult Hydrocephalus Clinical Research Network

The Core Data Project of the Adult Hydrocephalus Clinical Research Network (AHCRN) has enrolled nearly 200 patients since in late 2014.

CONTINUE READING
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 .

CONTINUE READING
Dr. Noel Tulipan

Hydrocephalus Community Loses a Trailblazer

It is with deep sadness we announce the passing of Noel Tulipan, MD, renowned neurosurgeon and trailblazer in fetal surgery repair for spina bifida.

CONTINUE READING
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).

CONTINUE READING

New Mobile App is First to Allow Hydrocephalus Patients and Doctors to Manage Care Collectively

HydroAssist™ will allow hydrocephalus patients to record and access their full hydrocephalus treatment history on their smartphones and tablets.

CONTINUE READING

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.

CONTINUE READING
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.

CONTINUE READING
Hydrocephalus Association Scholarships

Congratulations to Our 2015 Scholarship Recipients!

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

CONTINUE READING
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.

CONTINUE READING
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.

CONTINUE READING
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.

CONTINUE READING
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.

CONTINUE READING
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.

CONTINUE READING
Endoscopic Third Ventriculostomy

Endoscopic Third Ventriculostomy (ETV) in Children: Prospective, Multicenter Results from the Hydrocephalus Clinical Research Network (HCRN)

What determines the success of an ETV for treating hydrocephalus? Dr. Kulkarni shares their initial findings gathered from across HCRN centers.

CONTINUE READING
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.

CONTINUE READING
Madeleine Darowiche, hydrocephalus blogger

Adjusting to College as a New Student

In Madeleine’s monthly blog, she shares about adjusting to college life and her plan for shunt failure or other hydrocephalus-related issues.

CONTINUE READING
Teen swimmer with hydrocephalus meets the King of Spain

It’s Good to be the King…Or Meet Him!

Tomas Beltran, a record-holding swimmer with hydrocephalus, was honored at the 2014 Spanish National Sports Awards ceremony where he met the King and Queen of Spain.

CONTINUE READING
Dawn Mancuso, CEO, Hydrocephalus Association

Celebrating a BANNER Year!

With our eligibility to receive research funding through the CDMRP to launching our Adult Hydrocephalus Clinical Research Network, it has been a year of WINS.

CONTINUE READING
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.

CONTINUE READING
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.

CONTINUE READING

Hope in Progress

We have made great strides in hydrocephalus research, from understanding the basic causes, to exploring alternative treatments, to reducing shunt infections. There is hope.

CONTINUE READING
Clay Matthews, Hydrocephalus Challenge

And the Hydrocephalus Challenge WINNERS are…

The Hydrocephalus Association would like to extend a huge THANK YOU to Clay Matthews and Alison Sweeney for their generous donations for Hydrocephalus Challenges.

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