HA Updates

Nike Freestyle Benefit Hydrocephalus

Hydrocephalus Shunt featured on Nike’s Air Max Zero

A hydrocephalus patient of Doernbecher Children’s Hospital designs a hydrocephalus shoe in the annual Doernbecher Freestyle event with Nike.

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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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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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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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Hydrocephalus GivingTuesday Challenge

Historic #GivingTuesday for Hydrocephalus!

We have the chance to raise $80K in one day to support hydrocephalus research as well as programs and resources to support individuals and their families. #GivingTuesday is BIG this year!

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Hydrocephalus Professional Member Society

Why Join the Hydrocephalus Professional Member Society?

Professional members enjoy the benefits of the association working on your behalf to ensure greater coordination of research, identify and reach the patient population and provide training and educational opportunities tailored to the needs of the professional community. Join us today.

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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 Action Network

Election 2016: What Does this Mean for the Hydrocephalus Community?

The incoming Administration and Congressional Members will take office with new policy priorities. On healthcare, some will remain the same, while others will change.

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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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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 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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Adults living with hydrocephalus

Double Your Impact for Adult Hydrocephalus Research!

Donate now through October 31st and your gift will be matched dollar for dollar by a generous donor who will give up to $100,000 to further research into adult hydrocephalus!

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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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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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Team Hydro

Team Hydro’s Commitment to Curing Hydrocephalus Receives National Attention

Featured in Forbes, Team Hydro, now in it’s ninth year, has raised $546,335 for hydrocephalus research.

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NIH Nonprofit Forum 2016

Nonprofit and Government Leaders Unite Around Medical Research

Dr. Jenna Koschnitzky, Hydrocephalus Association Director of Research Programs, speaks at the 2016 NIH NINDS Nonprofit Forum.

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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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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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Alcyone Lifesciences Inc

Device Currently in Clinical Trials May Delay the Need for Emergency Shunt Surgery

ReFlow System by Alcyone Lifesciences, Inc., currently in clinical trials, may prevent the need for an immediate emergency shunt revision for patients with 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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Hydrocephalus Action Network

This August It’s All About #CuresNOW!

Have you joined the thousands of advocates around the country speaking out for Hydrocephalus treatments and cures? If not, join the #CuresNOW campaign today!

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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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Premature Baby Posthemorragic hydrocephalus

HA Convenes the First International Workshop on Posthemorrhagic Hydrocephalus

Workshop on Posthemorrhagic Hydrocephalus (PHH) proves the potential for researchers to alter the course of the development of hydrocephalus and its long-term outcomes.

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qFamily with daughter with hydrocephalus

Hydrocephalus Receives National Attention

TLC aired a feature piece on ‪hydrocephalus that featured three families – Roona in India, Lyndos in Uganda, and Parker in Oklahoma.

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Hydrocephalus Action Network

Congressional Action Supports the Hydrocephalus Community

Congress is hearing our message and starting to act on measures that will help our #hydrocephalus community, but we need to keep pushing our priorities.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Living with Anxiety and Hydrocephalus Part 4

I rarely spoke a word during my first year in college. I was so anxious. It seemed like everything that could go wrong, definitely did…Madeleine continues her blog series.

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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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