hydrocephalus in kids

Arkansas Tech University Family on the Road to a Cure

The Crouch family is leading fundraising efforts in Arkansas for the Northwest Arkansas WALK to End Hydrocephalus.

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2017 WALK to End Hydrocephalus

2017 WALK to End Hydrocephalus Schedule of Events

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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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The Hydrocephalus Association wants to THANK YOU!

By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!

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Jeff marathon runner hydrocephalus

Ever Wanted to Push Yourself to RUN?

Ever aspired to run a half or full marathon? Ever thought of running in honor of your loved one living with hydrocephalus? Do you have hydrocephalus and love to run?

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How Hydrocephalus has Impacted My Life: One Teen’s Story

Elizabeth, a Teens Take Charge guest blogger, shares how making a video about her journey with hydrocephalus has impacted her life and helped others.

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Hydrocephalus Advocates Join Rare Disease Week

HA staff were joined by members of our Hydrocephalus Action Network (HAN) to represent our hydrocephalus community in Rare Disease Week.

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Genetic Mutations and their Role in Congenital Hydrocephalus

Hydrocephalus has been shown to have multiple causes, including numerous genetic origins. Dr. Jenna Koschnitzky explores genetic mutations in a three blog series.

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Tackling the Challenges of Transitioning from Pediatric to Adult Medical Care

The HA Transition Summit will discuss ways of improving the transition from pediatric to adult-centered medical care for patients with hydrocephalus.

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Brainy Camp Hydrocephalus

Sleep Away Camp for Kids with Hydrocephalus

We are proud to announce Brainy Camps’ new camp for children living with hydrocephalus. Brainy Camps is a subsidiary of Children’s National Health System.

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Hydrocephalus Scholarship

The 2017 Hydrocephalus Association Scholarship Cycle is OPEN!

We are now accepting applications for our 2017 Hydrocephalus Association Scholarship Program.

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Staff of the Hydrocephalus Association

2016 Year-In-Review

As we close out yet another banner year, we are grateful for all that we have been able to achieve through the support of our caring community.

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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.

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Election

The Candidates on Healthcare

It is important to know before you vote what each candidate’s position is on healthcare and how it will impact you and your family managing hydrocephalus.

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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.

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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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Rare Artist Contest

Rare Artist Contest Now Accepting Submissions!

Enter the 8th annual Rare Artist contest and be eligible to win a trip to Washington, DC, to see your artwork displayed on Capitol Hill.

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Seattle Neurologist Honored for 18 Years of Service to Patients with Debilitating Brain Condition

Dr. Michael A. Williams received the Leadership Award by the Hydrocephalus Association to honor his career dedicated to caring for patients with hydrocephalus.

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Hydrocephalus Teens Take Charge Scholarships

Announcing Our 2016 Hydrocephalus Association Teens Take Charge Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2016 Hydrocephalus Association Teens Take Charge Scholarship Recipients.

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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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Families Unite with Scientists to Prevent Leading Cause of Brain Surgery in Children

The Hydrocephalus Association’s annual Vision Dinner will serve as the catalyst for a focused research initiative that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

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6 Year Old Finds Freedom Running

Abby Cahil has hydrocephalus. Despite the many daily challenges hydrocephalus can place on a child, Abby finds freedom through running. Read her story posted on Minnesota’s StarTribune. Click here to read the article.

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Hydrocephalus Mom Fights to Change Pennsylvania Truancy Law

Ashley Mantheiy, who has two sons with hydrocephalus, has worked with State politicians to introduce the Student Medical Leave Act of PA 2016

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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!

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Governor Terry McAuliffe with Hydrocephalus Families

Virginians Bring Hydrocephalus Awareness to the Governor

Members of the Virginia Hydrocephalus Association Community Network meet Governor Terry McAuliffe and share their personal hydrocephalus stories.

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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.

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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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Indiana declares September Hydrocephalus Awareness Month

Sixteen States Join Congress in Declaring September Hydrocephalus Awareness Month

Sixteen states join the U.S. Congress in declaring September as Hydrocephalus Awareness Month.

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Hydrocephalus Clinical Research Network

Happy 10th Anniversary to the Hydrocephalus Clinical Research Network!

The Hydrocephalus Clinical Research Network celebrates 10 years of pursuing impactful research into childhood hydrocephalus.

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Hydrocephalus Action Network

Join the #CuresNow Advocacy Olympics Team!

Consider yourself a Hydrocephalus Advocate medal winner by taking action to support #CuresNOW!

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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.

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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.

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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.

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Hydrocephalus Community Network

2016 Member Impact Report

I hope you take great pride in all that we continue to accomplish with your support.

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Susan Fiorella, hydrocephalus advocate, with her son.

Together Towards Tomorrow

If we don’t act with a collective sense of urgency, nobody else will. It’s been more than 50 years since a significant improvement has occurred in the treatment of hydrocephalus.

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Kids Raise Funds for Others to Survive

Three children in Singapore with chronic health conditions are raising money for other children in dire financial need so that they can receive medical treatment. One of the children is a young boy has two shunts to treat his hydrocephalus.

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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.

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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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Taurean Nixon

Superbowl Champ to Keynote Hydrocephalus Conference

Mr. Taurean Nixon of the Super Bowl Champion Denver Broncos will serve as the Inspirational Keynote Speaker at the National Conference on Hydrocephalus.

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