hydrocephalus in kids

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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Hydrocephalus Clinical Research Network

Hydrocephalus Clinical Research Network Adds Five New Centers

The Hydrocephalus Clinical Research Network (HCRN) adds five new research institutes to the network.

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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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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.

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Hydrocephalus Action Network

It’s Time for a National Hydrocephalus Registry

The Advancing Research for Hydrocephalus Act (H.R.2313) would establish a national hydrocephalus registry. It’s time to ask Congress to act.

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Seattle area-based Cider Company Partners with National Patient Advocacy Organization to Raise Awareness for Incurable Brain Condition

Locust Cider founder, Jason Spears, announces a partnership with the Hydrocephalus Association to raise much needed awareness and funds for education and research.

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OpEd: Term ‘Water Head’ Causes Hydrocephalus Community to Take Notice

On January 23rd, during the Weekend Update segment on NBC’s Saturday Night Live, Michael Che used the terms “window-licking water heads” to describe followers of Donald Trump. It caused our hydrocephalus community to take notice.

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National Hydrocephalus Conference

Conference Registration is OPEN!

Registration for our 14th National Conference on Hydrocephalus is OPEN! Join us in Minneapolis, Minnesota, June 16 – 19, 2016.

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Hydrocephalus Mom

That Feeling of Helplessness

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

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Doctor holding a brain shunt

ISHCSF Highlights HCRN Studies on Shunt Failure and Infection

ISHCSF newsletter highlights Hydrocephalus Clinical Research Network (HCRN) studies around hydrocephalus shunt infection rates and risk factors.

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Lance Lee, PhD, Hydrocephalus Association Innovator Awardee

Announcing the 2015 Innovator Award Grantees

2015 Awardees focused on research to better understand why hydrocephalus develops and to identify therapies to prevent or reverse hydrocephalus.

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GivingTuesday Hydrocephalus Association

Double your Gift of Hope

This #GivingTuesday, for every dollar you donate to the Hydrocephalus Association, a generous donor will match it up to $15,000!

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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 .

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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).

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Hydrocephalus Association Announces New Chief Executive Officer

The largest hydrocephalus patient advocacy organization, the Hydrocephalus Association (HA), selects Diana Gray as the new Chief Executive Officer (CEO) to lead an aggressive growth strategy.

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Niagara Falls and the Peace Bridge Lit Blue for Hydrocephalus Awareness

  These two historic landmarks will be illuminated blue to commemorate Hydrocephalus Awareness Month 2015. Bethesda, MD | September 17, 2015 Niagara Falls and the Peace Bridge connecting the United States to Canada will be blue in honor of Hydrocephalus Awareness Month on the evening of Friday, September 18th. The lighting of these historic landmarks […]

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Saint Louis Science Center’s James S. McDonnell Planetarium Lighting for Hydrocephalus Awareness

St. Louis’ James S. McDonnell Planetarium Lit Teal for Hydrocephalus Awareness

Saint Louis Science Center’s James S. McDonnell Planetarium Lighting for Hydrocephalus Awareness will take place on September 18, 2015, at sunrise and sunset.

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Seven States Join Congress in Declaring September Hydrocephalus Awareness Month

Connecticut, New York, Virginia, Tennessee, South Carolina, Illinois, and Colorado unite with local leaders of the Hydrocephalus Association to provide awareness for an incurable brain condition affecting over 1 million Americans

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Hydrocephalus Infographic

Hydrocephalus Awareness Infographic

Raise hydrocephalus awareness by sharing this infographic!

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Hydrocephalus Awareness Month Challenge

Turn the Country Hydrocephalus BLUE!

Our Hydrocephalus Awareness Month challenge? Let’s turn this country #hydrocephalus BLUE! Here’s how…

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Hydrocephalus Awareness Month 2015

Hydrocephalus Awareness Month 2015 is HERE!

September is Hydrocephalus Awareness Month! Here are 15 ways you can make an impact and raise awareness.

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Teen with money

Money, Money, Money – Helping Out Without Emptying Wallets

TTC Member Megan Rivkin challenges young people to get involved in advocating and fundraising to increase research efforts and public awareness of hydrocephalus.

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Miss Tennessee Hayley Lewis, Chara and Ema McLaughen, Governor Haslam, Crissy Haslam

Governor and First Lady of Tennessee Meet Ema McLaughen

Ema McLaughen, her mother Chara, and Miss Tennessee 2014 Hayley Lewis meet with Governor Bill Haslam and First Lady Crissy Haslam in Nashville.

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Boy with hydrocephalus and cerebral palsy

FIGHTER! Hydrocephalus and CP Don’t Stop THIS Guy!

Today is Cerebral Palsy (CP) Awareness Day, part of CP Awareness Month! Meet William, living with both hydrocephalus and CP.

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My 4-H Speech about Hydrocephalus

India is a 5th grade school “buddy” to a Kindergartner who has hydrocephalus. India used her 4-H competition to educate the public and share her friendship.

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Young woman with hydrocephalus

Making the Hydrocephalus Association a Part of My Legacy

At the age of 25, Haylea is thinking about how she will make a lasting impact in the hydrocephalus community through her volunteerism and estate planning.

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