hydrocephalus

Hydrocephalus Video Blog Parents

Preparing for the Transition to College

In this installment of our video blog series, Debby addresses sending a loved one with hydrocephalus off to college and how to plan for this transition.

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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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4th Annual Hydrocephalus Walk takes place in Chattanooga, TN

Nearly 400 people attended the walk this year in Chattanooga, raising money for hydrocephalus.

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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 Video Blog Parents

Pregnancy and Hydrocephalus

In this installment of Debby’s video blog series, she discusses pregnancy and hydrocephalus, sharing from her personal experiences with her daughter, who has hydrocephalus, and the birth of her first grandchild.

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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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NYC Hydrocephalus Education Day Featured Image

NEW Hydrocephalus Education Day

The Hydrocephalus Association in partnership with NYU Division of Pediatric Neurosurgery announce a one day Hydrocephalus Education workshop in NEW YORK!

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Frisco Commons Park Partners with the Inaugural Hydrocephalus Association WALK in Dallas, TX

Working with the Frisco Parks and Recreation Department, Frisco Commons was selected for the site of the inaugural 2014 Dallas/Fort Worth Hydrocephalus Association WALK which will take place on September 27, 2014.

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Matt Kocsis WALKing Proud for Hydrocephalus Awareness

Matt Kocsis, an entering senior at Cumberland Valley High School, shares his hydrocephalus journey of 98 brain surgeries, three years in a wheelchair, and his enduring hope for better treatment options and a cure. He completed the 2014 Central PA Hydrocephalus Association WALK in Hershey, PA.

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National Hydrocephalus Conference 2014

2014 Conference – Adult Track Highlights

The Hydrocephalus Association’s National Conference on Hydrocephalus offers adult attendees an opportunity to find the information, resources, and support they need to live confidently with their condition. Join us in Portland, Oregon, July 9-11, 2014.

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National Hydrocephalus Conference 2014

2014 Conference Early Bird Rates Extended!

Early bird registration rates for the Hydrocephalus Association’s 13th National Conference on Hydrocephalus have been extended through June 16th! Register today! Visit www.hydrocephalusconference.org.

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Dr. Timothy Vogel Joins the Robert H. Pudenz Lectureship at Conference

Timothy Vogel, MD, will join the Robert H. Pudenz Lectureship scientific research panel at the Hydrocephalus Association’s 13th National Conference on Hydrocephalus, July 9-11, 2014, in Portland, Oregon.

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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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Congratulations 2013-2014 Brian Christopher Newcomer Reaching for Racquets Tennis Scholarship Recipients!

The Hydrocephalus Association is so pleased to announce the 2013-2014 Brian Christopher Newcomer Reaching for Racquets Tennis Scholarship Recipients!

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PA Boy Wins Elks Child of the Year

Young Renfrew boy living with spina bifida, hydrocephalus, and other conditions, is named the 2014 to 2015 Child of the Year from the PA Elks.

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National Hydrocephalus Conference 2014

2014 Conference Update – Preliminary Schedule Now Available!

The Hydrocephalus Association staff is happy to announce the release of our preliminary schedule for our upcoming 13th National Conference on Hydrocephalus, Community. Clarity. Cure., July 9-11, 2014, in Portland, OR.

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Couple Builds Longstanding Home for Handicapped Sons

The Cibulas spent a decade building a house that their sons could grow up in and live in after their parents were gone. It features cutting-edge technology and does not aesthetically announce that anyone disabled lives there.

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Young Adults at Hydrocephalus Association Conference

Countdown to Conference: Conference’s Biggest Take-Aways

Haylea Blank shares the take-aways from attending two Hydrocephalus Association national conferences that have helped her manage her hydrocephalus into adulthood.

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New Neurology Channel on BroadcastMed

BroadcastMed launches a new Neurology Channel.

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Meet the Medical Chairs of the 13th National Conference on Hydrocephalus

The Hydrocephalus Association is pleased to announce the Medical Chairs of the 13th National Conference on Hydrocephalus – Drs. Nathan Selden, Marion “Jack” Walker, and Michael A. Williams.

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Managing Children by a Simple Touch of the Hand

Can the touch of a hand to the head, an assessment tool thought to be time-honored and true for assessing pressure in the brain of an infant, also be consistent across physicians? Dr. John Wellons summarizes the findings of this recent study from the Hydrocephalus Clinical Research Network.

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Happening NOW: First Annual Vision Dinner in New York City

The Hydrocephalus Association’s First Annual Vision Dinner, “A Time for Awareness; The Hope for a Cure,” unites politicians, neurosurgeons, scientists, advocates, and business leaders to raise the public profile of hydrocephalus and to share the current research initiatives and successes around the condition.

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Use of Limited Sequence CT Scans in Pediatric Hydrocephalus

It is not uncommon for children with hydrocephalus to undergo numerous CT scans throughout their life, raising the concern about the effects of the radiation exposure for the future. Edward Ahn, MD, and colleagues at Johns Hopkins Hospital suggest the use of limited-sequence head CT scans for children with hydrocephalus to limit the amount of radiation they receive during CT scans.

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Research UPDATE: Exploring Alternative Treatments

In our third installment of the Mentored Young Investigator (MYI) blog series, we showcase 2009 MYI recipient, Joon Shim, Ph.D.  At the time of the award, Dr. Shim was a postdoctoral fellow at Boston Children’s Hospital. He is now a Research Assistant Professor at Indiana University.  He received an MYI grant for his study, “The […]

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Celebrities Take Notice of Hydrocephalus

Justin Timberlake, Taylor Swift, Alison Sweeney, Dr. Lauren Streicher, Kasey Kahne, and Dick Wagner are all helping raise the profile of hydrocephalus, a little known brain condition that affects 1 million Americans, from infants to seniors. The Hydrocephalus Association thinks this is a great way to kick off Hydrocephalus Awareness Month, September 2013.

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HCRN Update: Shunt Infection Risk and Treatment in Children

Dr. Tamara Simon discusses her work as the Principal Investigator for the shunt infection registry for the Hydrocephalus Clinical Research Network. Her study aims to understand the risk factors associated with shunt infection and how shunt infections are being treated.

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Current Chicago WALK Chair Featured in Local News

Matthew Schwerha, reporting for the Barrington Courier-Review, interviews one of our current Chicago WALK Chairs, Katie Cook, who’s son Conor has hydrocephalus. The Chicago WALK took place on August 18, 2013 at Soldier’s Field.

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Local Chicago Family WALKS for Young Zane

Matthew Schwerha, reporting for The Doings Weekly, interviews Susan Yousif, who’s 2 year-old son has hydrocephalus, at the Chicago WALK, which took place on August 18, 2013 at Soldier’s Field.

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Announcing Our 2013 Research Grant Recipient

The Hydrocephalus Association (HA) has selected Timothy Vogel, M.D., from Cincinnati Children’s Hospital Medical Center, to receive funding for an additional research grant in HA’s 2013 grant cycle, for his work in basic science that improve our understanding of the root causes of hydrocephalus.

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You, the Healthcare Wizard and Finding the Perfect Plan

If you’re new to buying healthcare, finding the perfect plan can be like trying to find the Wizard without having a yellow brick road to guide you to the Emerald City, especially when you’re living with a pre-existing condition like hydrocephalus.

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Good Housekeeping Magazine Raises Awareness of Hydrocephalus

Cortney Pellettieri of Los Angeles, CA, is selected as one of 5 women committed to a cause and making a difference. She is the co-chair for the Los Angeles Hydrocephalus WALK, which will raise funds and awareness for a condition that affects 1 million Americans and is the leading cause for brain surgery in children.

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Tuscaloosa Teen Receives Companion Dog

Andrew Smith, 14, who has spina bifida and hydrocephalus, and his mom Donna welcome a 2 year old Labrador retriever/golden retriever mix into their home and family, reports TuscaloosaNews.com.

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Tucson Boy Receives 4,600 Birthday Wishes

Tucson News Now reports that Jacob Mockbee received 4,600 birthday wishes from around the world after his father and fellow police officers in Tucson, Arizona, raised a Facebook challenge to have 1,600 cards sent to Jacob for his 16th birthday. Jacob lives with spina bifida and hydrocephalus.

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China Working Toward a Spina Bifida and Hydrocephalus Network

The International Federation for Spina Bifida and Hydrocephalus (IF) and the China Disabled Persons’ Federation (CDPF) held a seminar on the care for children and adults with Spina Bifida and Hydrocephalus at the China Rehabilitation Research Center (CRRC) in Beijing. The CRRC will create a center for treatment within their hospital and is a first step toward creating a network in China.

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Two Canadian Rockers Tour Europe to Raise Awareness for Hydrocephalus

Two Canadian rockers, Danny Lamb and Jay Baty, will tour Europe to raise awareness for spina bifida and hydrocephalus.

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Young Boy Embodies Panhandle Spirit

Dillon Wades was born with cerebral palsy, epilepsy, and hydrocephalus, for which he has 2 shunts. ABC 7 affiliate ConnectAmarillo.com highlight the Wades family and their sons, Dillon and Connor, as examples of the Panhandle Spirit.

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Virginia Boy Granted Wish by the Make-A-Wish Foundation

Progress-index.com reports on ten-year-old Casey Wray of Colonial Heights, VA, who was given an all expense paid trip to to New Jersey to see WWE’s WrestleMania by the Make-A-Wish Foundation. Casey has hydrocephalus and, on the trip with his family, met other families from all over the world, including another little boy from Kansas with hydrocephalus.

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Over 2,500 New Cases of Hydrocephalus Reported in Uganda Each Year

New Vision, a Ugandan newspaper, reports that health estimates show over 2,500 new cases of hydrocephalus are reported each year. Since treatment can be cost prohibitive, Johnson Derek, the Executive Director for CURE hospital in Mbale, states that they have developed a way to assess families ability to pay and are providing children much needed medical help.

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Connection Found Between Congenital Hydrocephalus and a Genetic Defect

Researches from the Texas A&M Institute of Biosciences and Technology have found a connection between hydrocephalus and a genetic defect, a finding that may eventually lead to treatments for this form of hydrocephalus.

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I Smile Because You Are My Sibling…

The relationship between siblings is complex and sometimes even…shall we say… strained, but there is a powerful, unbreakable bond that endures through the best and hardest of times. Teens Take Charge (TTC) Advisory Council Members, Harrison Silver and Alexis Rocciola, share a special message to their siblings in our National Siblings Day blog honoring a special group of loved ones in our lives – brothers and sisters.

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