spina bifida

Middle School Science Fair Features Hydrocephalus Booth

Raising awareness about the issue is the first step in finding treatment and prevention of hydrocephalus.

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World Birth Defects Day: Global Alliance calls for better prevention, care and research for Neural Tube Defects (NTDs) and Hydrocephalus

The PUSH! Global Alliance joins forces with over 70 participating organizations in promoting and increasing global awareness of birth defects on World Birth Defects Day.

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En Garde! The Sport of Fencing and Hydrocephalus

Jonathan, who lives with spina bifida and hydrocephalus, shares discovering fencing as a form of exercise and competition.

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Neural Tube Defects (NTD)

Learn about the genetics of neural tube defects, which can lead to hydrocephalus.

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The Challenges of Transitioning to Adult Care

HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap.

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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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Royal Duchess to Attend Shine’s Golden Anniversary Launch

The Duchess, who has been the patron of the charity since 1973, will meet some of the charity’s members among the 250 delegates attending the launch.

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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.

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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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Hydrocephalus Association Scholarships

Congratulations to Our 2015 Scholarship Recipients!

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

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Cell growth in shunt

Research into Shunt Obstruction Earns Award from SRHSB

Dr. Carolyn Harris awarded the first annual Gift of Knowledge by the SRHSB for research into hydrocephalus shunt obstruction.

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Brain 101 Educational Blog Series

Brain 101: An Overview of the Anatomy and Physiology of the Brain

The brain is a fascinating and complex organ. Research of the brain and understanding the inner workings of the brain will help us to learn about the mechanisms of certain neurological conditions, including hydrocephalus.

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Washington Wizards Grant Teen with Hydrocephalus His Wish

The Washington Wizard with Kids Wish Network granted a Maryland teen, Elijah Taylor, born with hydrocephalus and spina bifida, his dream to attend a game.

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Hydrocephalus Video Blog Parents

Through a Mother’s Eyes: Three Children, Two with Hydrocephalus

In this video blog episode, Debby shares her daughters’ diagnoses of hydrocephalus and briefly discusses their journey and the various causes of hydrocephalus, including genetics.

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Videos from the IF Global Conference

View videos from the International Federation for Spina Bifida and Hydrocephalus’ 25th International Conference, GENErating Changes, in Buenos Aires, Argentina on their YouTube channel.

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Talk Box Interviews Hydrocephalus Conference Keynote Speaker Adam Page

KGW.com Portland interviews Adam Page live on Talk Box about his paralympic experience and serving as the keynote speaker for the Hydrocephalus Association’s 13th National Conference on Hydrocephalus held in Portland, OR, July 9-11, 2014.

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Global Partners Unite Around Spina Bifida and Hydrocephalus

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) in partnership with Boston Children’s and the International Federation for Spina Bifida and Hydrocephalus (IF) co-hosted the Spina Bifida and Hydrocephalus Partner Engagement Meeting April 22, 2014. The meeting marked the first ever discussion among the 21 organizations in attendance to advance spina bifida and hydrocephalus prevention and care. The Hydrocephalus Association was in attendance.

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Dr. Andrew Zabel Tackles Anxiety and Hydrocephalus

Dr. Andrew Zabel, Ph.D., ABPP, Kennedy Krieger Institute, returns to the Hydrocephalus Association’s 13th National Conference on Hydrocephalus to lead two sessions – the ABCs of IEPs and Anxiety, Depression and Hydrocephalus. Join us in Portland, OR, July 9-11.

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Gold medal Paralympian Adam Page to Keynote the 13th National Conference on Hydrocephalus

Gold medal Paralympian Adam Page will deliver the motivational keynote address at the Hydrocephalus Association’s 13th National Conference on Hydrocephalus in Portland, Oregon, July 9-11, 2014.

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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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Money and Superstition Delay Treatment of Hydrocephalus for Nigerian Children

In the National Mirror of Nigeria, Mr. Afolabi Fajemilo shares the story of his son, Festus, exposing the struggle many parents face in Nigeria when confronted with a diagnosis of hydrocephalus and spina bifida. The Fajemilo family founded the Festus Fajemilo Foundation to help other parents learn about the condition and treatment options and wade through cultural stigmas and financial hurdles. The foundation is part of the Hydrocephalus Association Community Support Network.

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Looking Back…Moving Forward: Spina Bifida and Hydrocephalus Do Not Define Me

October is Spina Bifida Awareness Month. Nicole Small reflects on living with both spina bifida and hydrocephalus since birth, as the Hydrocephalus Association continues our interview series commemorating our 30th anniversary.

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California Teen Finds Freedom in the Pool

The Novato Advance reports on Shannon Dugdale who has spina bifida and hydrocephalus and, when not in the pool, uses a wheelchair. She has found a new freedom as a swimmer and is a valued member of her school swim team, the Novato Riptides.

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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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Oldest Person Living with Spina Bifida Turns 90

The International Federation for Spina Bifida and Hydrocephalus (IF) shares that Albert De Greve, born with a low lesion Spina Bifida in Zelzate, Belgium, on 13 March 1923, recently turned 90.

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International Conference on Spina Bifida and Hydrocephalus

The International Federation for Spina Bifida and Hydrocephalus (IF) hosts it’s 24th international conference “Unite and Share” on June 28 and 29, 2013, in Izmir, Turkey. The conference will bring together healthcare professionals and individuals with spina bifida and hydrocephalus to share the latest knowledge and exchange their experiences.

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Looking Back…Moving Forward: One Vision Built on Determination

Hydrocephalus Association commemorates our 30th anniversary with a series of interviews with members of our community. These intimate and conversational pieces provide both educational content as well as a historical perspective on the heart behind the work of our association. This week we sit down with two of our founding members, Emily Fudge and Cynthia Solomon, to discuss the early days of forming the association, including their vision and their challenges.

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Have a Heart Home Builds Custom Home for Girl with Hydrocephalus

The Parker family received an early special holiday gift when the Have A Heart Home chose their family from a pool of applicants for a custom-built home in Utah. They were selected after they shared their moving story about their daughter, Emylie, who was born with myelomeningocele spina bifida, Arnold-Chiari II malformation and hydrocephalus.

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Making Life Happen: Living Life with Spina Bifida and Hydrocephalus

October is Spina Bifida Awareness Month and October 25th is the first World Spina Bifida and Hydrocephalus Day sponsored by the International Federation for Spina Bifida and Hydrocephalus (IF) and supported by the European Parliament. In the Hydrocephalus Association’s efforts to raise awareness about spina bifida and hydrocephalus, we would like to highlight an inspiring young adult from our community. Meet Luke Russell, a freshman at the University of Wisconsin-Whitewater who plans to major in marine biology with either a second major or a minor in psychology. He has spina bifida and hydrocephalus.

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There are a Million Hydrocephalus Stories; This is the Story of Hannah

by HA Member Susan Andersen Moore Our daughter Hannah has a programmable VP shunt for her hydrocephalus. Here is a little of her story. Hannah was born sometime in May of 2002. She was abandoned at 4 months of age on the footsteps of the Social Welfare Institute in Luohe City China. She was terribly […]

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