hydrocephalus

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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My Transition from Pediatric Care to Adult Care

The Dr. Seuss books and wooden “choo-choo” train in the waiting room were clear indicators that it was time for me to transition to a physician that treated adults.

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Over 500 Adult Hydrocephalus Patients Enrolled in Registry

HA is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and NPH.

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CSF Shunt Entry Site Trial

The CSF Shunt Entry Site Trial has reached the halfway mark in patient enrollment – that is 224 patients enrolled!

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Hydrocephalus and Disability Benefits

The Social Security Administration (SSA) provides support to disabled individuals through two separate disability benefit Programs: SSI and SSDI. Learn more.

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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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Top 2016 WALK to End Hydrocephalus Teams!

Congratulations to our Top 15 WALK to End Hydrocephalus Teams throughout the country.

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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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2016 Innovator Award Announcement

The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.

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Whole Foods Features Cider With A Purpose

Jason Spears and his brother Patrick founded Locus Cider in March of 2015 inspired by real, tough people, a.k.a children with hydrocephalus.

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Student Spotlight: Jamie Wright Advocates For Hydrocephalus Awareness

Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.

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Support the Hydrocephalus Association by Shopping through AmazonSmile!

Did you know that you can use AmazonSmile and support HA while you shop?

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Update on Obamacare

Congressional leaders are moving to repeal Obamacare per the campaign promise of President-elect Donald Trump. Here is an update on moves to date.

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This #GivingTuesday was a HUGE success because of YOU!

Because of you and our generous donors that provided matching funds we were able to exceed our goal!

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NPH

Like Father, Like Son: An NPH Journey

One man watched his father decline into a state of confusion until diagnosed with Normal Pressure Hydrocephalus. Then he found himself traveling the same road.

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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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Smart Girls Making College Dreams A Reality

Fiona Wilcox, chair of the TTC Advisory Council, speaks at The College Board forum on attending college with a chronic medical condition.

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Hydrocephalus Action Network

Day of Action. Support the 21st Century Cures Act! #CuresNOW

Support 21st Century Cures Act (Cures), a bill that could change the lives of many patients by providing funding for medical research. Urge Congress to pass the Cures Act before the end of this year!

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Risk Factors For Posthemorrhagic Hydrocephalus

Learn about how Dr. Hannah Tully is uncovering risk and protective factors associated with the development of PHH, and the results of a large retrospective study she recently presented.

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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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Neuroscience Nurse

Mary Decker Mentorship Award: Call for Nominations

Nominate a dedicated Neuroscience Nurse with demonstrated excellence in neurosurgery, specifically with hydrocephalus, for the Mary Decker Mentorship Award!

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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 Action Network

September 22 is a National Day of Action!

Thursday is a National Day of Action across the country as advocates converge on Capitol Hill at the Rally for Medical Research.

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LA Kings Unite with Hydrocephalus Community to Raise Over $200K

The LA Kings Insider profiles our Los Angeles Hydrocephalus WALK and the incredible commitment of the LA Kings to standing with our hydrocephalus community.

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Teen with Hydrocephalus

Living Hydro: One Family’s Journey

Our Charlotte Hydrocephalus WALK Chair shares her daughter’s journey with hydrocephalus.

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Long Island WALK featured on Local Radio Program

Mia Padron, our Long Island Hydrocephalus Association WALK Chair, is interviewed by Dr. Carlos on “In the Best Interest of Children” about the difficulties of diagnosing and living with hydrocephalus. Her interview starts about 5:30 minutes in.

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Motorcross for Hydrocephalus

The Race is on to Promote Hydrocephalus Awareness

Motocross Star is spreading awareness about hydrocephalus, one race at a time.

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Hydrocephalus WALK in Indiana

Why I WALK – For a Better Tomorrow

The WALK has become so important to me because I know how it feels to be alone and confused after being diagnosed with hydrocephalus.

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Desiree Dyson

Miss Tennessee High School America Joins With HA

Miss Tennessee High School America joins HA to bring awareness for those living with hydrocephalus in the state of Tennessee and across the country.

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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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St. Louis Doctors Among Few Performing ETVs

Because of the country’s high numbers of children with hydrocephalus, doctors, including Dr. David Limbrick of St. Louis Children’s Hospital, traveled to Uganda so they could learn the technique. Two years ago, Limbrick traveled 8,000 miles to the East African country for more than a week of intensive training.

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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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Orin Hatch Rare Disease Caucus

Hydrocephalus on the Hill

Philip Brooks, a teen HA community member, recounts his experience during Rare Disease Week, when hundreds of people gathered to advocate for hydrocephalus and other conditions.

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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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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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MOI Opens Special Camp for Children with Nerve Issues

Muhimbili Orthopedic Institute (MOI), in collaboration with Friends of Children with Cancer (FOCC), has launched a special camp to conduct operations for the children with neurosurgical problems.

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Recognizing NPH, Reversing Dementia

A certain type of hydrocephalus can cause a person to lose the ability to walk and talk normally. And because the symptoms are similar to dementia or Parkinson’s, it’s a condition that can be easily overlooked. But if doctors properly diagnose N.P.H. , they can often reverse it.

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6-Year-Old to be Hydrocephalus Awareness Ambassador

Elyse was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness,” for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States.

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