HA Blog

A Poem for HydroWarriors

September 25, 2020

Amanda Harrinauth is a poet, author, life coach and Special Olympics athlete living with hydrocephalus, vision impairment and autism. For Hydrocephalus Awareness Month, she wrote a poem to inspire others. 

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HA Welcomes New National Director of Development

September 22, 2020

Linda Riley has joined the Hydrocephalus Association as the new National Director of Development. Linda brings more than 20 years of fundraising experience to this position.

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Baltimore Mom on a Mission to Find a Cure for Son’s Brain Disorder

September 10, 2020

Jacob Heston was just four weeks old when he was diagnosed with hydrocephalus, a life-threatening…

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Bergen County Board of Commissioners Issues Resolution Naming September Hydrocephalus Awareness Month

September 8, 2020

The Bergen County Board of Commissioners partners with the Hydrocephalus Association to raise awareness about hydrocephalus.

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Study Explores Quality of Life of Children with Hydrocephalus and Caregivers

September 2, 2020

A new study published in the Journal of Neurosurgery: Pediatrics assessed quality of life and mental wellbeing of both children with hydrocephalus and their caregivers.

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Let’s Get Loud for Hydrocephalus Awareness Month!

August 31, 2020

September is Hydrocephalus Awareness Month – our chance to bring national attention to the over one million Americans living with hydrocephalus. Let’s make some noise on social media by showing what YOU would do to end hydrocephalus. 

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The Hydrocephalus Scoop on Capital Hill for August 2020

August 26, 2020

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

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Learning Disabilities in Children with Hydrocephalus

August 18, 2020

Learning disabilities (difficulties) are not uncommon in kids with hydrocephalus. Parents must be prepared to act early to give their child the best chance for success.

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Individualized Education Program (IEP)

August 18, 2020

Guidance for parents so they can learn how to develop and maintain good communication between with school personnel.

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Sophia Gigante: Finding Strength from Within

July 31, 2020

Born with hydrocephalus and later developing hypotonia, Sophia Gigante was tired of hearing doctors tell her no. But at age 16, a trip to the gym changed everything and she soon realized there wasn’t much she couldn’t do.

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Get to Know Dr. Engin Deniz: HA 2019 Innovator Award Grantee

July 27, 2020

For our Meet the Innovator Award Grantees Blog Series, we interviewed Dr. Engin Deniz, one of four scientists who received a 2019 Innovator Award. Through his research, he hopes to determine how cilia, small hair like structures that move CSF, contribute to post-traumatic hydrocephalus.

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Dorothy Sorlie: A Teacher’s Unbreakable Spirit

July 21, 2020

Dorothy Sorlie spent months suffering with debilitating symptoms until finally being diagnosed with NPH. Now she educates others about this little-known condition.

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Staying out of the Hospital: Comparing Hydrocephalus Treatments in the Pediatric Population

July 13, 2020

A new Hydrocephalus Clinical Research Network (HCRN) study examined differences in the number of subsequent surgeries a child with hydrocephalus had to undergo after their initial treatment. The study compared a shunt, an endoscopic third ventriculostomy (ETV), and an ETV with chorioid plexus cauterization (ETV-CPC).

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Over 2,000 People Attend HA’s First-Ever Virtual Conference

July 10, 2020

For the first time ever, our National Conference on Hydrocephalus, HA CONNECT, was held entirely online. A record 2,000 people from over 60 countries participated in our virtual sessions and connected through our HA CONNECT mobile app!

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A Conversation with Aesculap About New M.blue Valve

May 28, 2020

On May 15th, Aesculap Inc., in partnership with MIETHKE, released a new valve for hydrocephalus patients called the M.blue valve. This week, we spoke with them to learn more about their new valve and what it means for people living with hydrocephalus.

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Individuals Diagnosed with Idiopathic Normal Pressure Hydrocephalus Show Improved Quality of Life after Shunting

May 18, 2020

A new study found that shunting improved quality of life for people living with Idiopathic Normal Pressure Hydrocephalus (iNPH).

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NPH and Comorbidities

April 21, 2020

NPH can frequently co-exist with other age-related neurologic and medical conditions that may produce similar symptoms.

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You or Your Loved One Has Just Been Diagnosed – What’s Next?

April 16, 2020

Have you or a loved one been newly diagnosed with hydrocephalus? We’re here to help you on this journey!

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A Tribute to Dr. James T. Goodrich

April 13, 2020

The Hydrocephalus Association and many in the hydrocephalus community were deeply saddened to learn of the passing of Dr. James Goodrich on March 30, 2020. Dr. Goodrich was a pediatric neurosurgeon and longtime friend and supporter of HA.

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HA CONNECT 2020 Goes Virtual

April 10, 2020

After much discussion with our conference program planning committee and the leadership of the Hydrocephalus Association (HA), we have decided to change our 16th National Conference on Hydrocephalus, HA CONNECT, from an in-person event to a virtual experience.

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