The Importance of a Support System
Living with hydrocephalus can feel overwhelming at times. That’s why building a strong support system is so important. Our team of trained professionals is here to help! Our staff will listen to your concerns and connect you with helpful resources.
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The Hydrocephalus Scoop on Capitol Hill – Sept/Oct 2021
The Hydrocephalus Association has been busy protecting hydrocephalus-related research dollars in Congress, and working with members Congress to recognize National Hydrocephalus Awareness Month.
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Let’s Make Some Noise for Hydrocephalus Awareness Month!
September is Hydrocephalus Awareness Month (HAM), our chance to shine a light on hydrocephalus and how it impacts our community! Help us make a big impact by posting about HAM…
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Announcement About Anuncia ReFlowTM System Mini
Earlier this year, Anuncia Inc., a medical device company focused on the development of treatment devices for hydrocephalus and other cerebrospinal fluid (CSF) disorders, announced that the ReFlowTM System Mini received the U.S Food and Drug Administration (FDA) Breakthrough Device Designation. The ReFlowTM System Mini is the next generation version of the commercial ReFlowTM Ventricular System.
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In the NICU: Preparing Families for Life with Hydrocephalus
A recent study explored how neonatal intensive care units (NICUs) can better prepare families that receive a diagnosis of posthemorrhagic hydrocephalus of prematurity (PHHP).
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Hydrocephalus and Independence
By Madeleine Darowiche, HA Volunteer So, you’re considering living on your own for the first time, but you have hydrocephalus and question if it’s possible? You’ve come to the right…
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How to Reconnect and Trust your Body
In this blog, Bethany Holmes, Certified Integrative Health Coach, and Reiki Practitioner discusses how to reconnect, trust, love, and heal your body after trauma.
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A Mystery Disease: One Woman’s Struggle to Get Diagnosed with NPH
Merlin Bott woke up one morning in October 2013 with a severe case of vertigo. It quickly got worse and soon, she became so dehydrated that she had to be hospitalized. Finally after 29 harrowing days in the hospital, she was told she needed brain surgery.
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Innovator Award Series: Get to Know Dr. Aditya S. Pandey
In this installment of our Meet the Innovator Award Grantees Blog Series, we interviewed Dr. Aditya S. Pandey, one of four scientists who received a 2020 Innovator Award. Dr. Pandey’s team is testing the use of acetazolamide (Diamox) directly into the ventricles to determine if it can prevent hydrocephalus.
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The Hydrocephalus Scoop on Capitol Hill March 2021
The cherry blossoms are blooming in Washington, DC, which is a sure sign that the new Congressional session is well underway. Let’s get you up to speed on what’s been happening on hydrocephalus policy issues so far.
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My Thoughts for Teachers
Sarah Kell, an adult living with hydrocephalus, offers thoughts for teachers when working with a child with hydrocephalus.
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Child with X-Linked Hydrocephalus Defies the Odds
Imagine being told that your newborn child may never eat on his own. That’s what happened to Madeline Hopkins and her fiance Sean just a few days after their son was born when they learned he had a rare disease known as L1 Syndrome or X-Linked Hydrocephalus.
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Technology Update: Neurallys developing Bluetooth enabled ICP monitor
French startup Neurallys is developing an implantable intracranial pressure (ICP) monitor for hydrocephalus. The device continuously measures, records and sends ICP data to a patient’s smartphone via a Bluetooth connection.
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Michigan Writer Pens Children’s Books Inspired by HydroWarrior
After seeing the way his friend’s son Josh bravely dealt with his hydrocephalus, Joseph Gray was inspired to write two children’s books featuring the adventures and abilities of children. He hopes the books will raise awareness about hydrocephalus and foster acceptance of all kids.
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2020 Innovator Award Series: Get to Know Dr. Stavros Taraviras
Learn about Dr. Stavros Taraviras, one of four scientists who received a Hydrocephalus Association 2020 Innovator Award. Dr. Taraviras is working to turn scar tissue back into ependymal cells as a novel therapeutic strategy for hydrocephalus.
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Balancing Work, School, and Hydrocephalus
In this blog, Carly shares the important takeaways about what it means to balance parts of your life along with hydrocephalus.
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Thriving with NPH – Dorothy Sorlie’s Story
Dorothy’s goal is to help others find an accurate NPH diagnosis and treatment to avoid what she, and so many, have experienced.
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Thriving with NPH – Gary Chaffee’s Story
Gary has been living with NPH for over 40 years. He hopes the information he offers is helpful to someone that is just learning about the condition.
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Thriving with NPH – Trish Bogucki’s Story
Trish was diagnosed with NPH and had shunt surgery. Thanks to that and several kinds of therapy, Trish is now back to doing what she loves.
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The Benefits of Informing Your Child’s School about Their Hydrocephalus
Informing your child’s school about hydrocephalus is important. Read these tips to ensure that you’re prepared when talking to the school about your child’s condition.
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