OUR CAUSES VIEW ALL
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Parents
Dealing with your child’s hydrocephalus diagnosis can be overwhelming. It’s common to have countless questions that range from learning more about what hydrocephalus is to what one can expect a child’s experience to be across the life spectrum.
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Teens and Young Adults
If you’re a teen or young adult affected by hydrocephalus, we want you to know that you are not alone. Browse our teen and young adult pages to learn about resources to help you. This is YOUR place for information and empowerment.
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Adults and Caregivers
A hydrocephalus diagnosis is overwhelming, whether you’re a recently diagnosed adult, someone who’s been living with the condition for many years, or a friend or family member. Here you will find information enabling you to have more control of your life.
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NPH and Caregivers
A normal pressure hydrocephalus (NPH) diagnosis is often confusing, complex, scary and frustrating. For those living with NPH and their caregivers, staying informed about the condition is essential to managing care.
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Community Network
It’s important to know that you’re not alone as you deal with hydrocephalus. The Hydrocephalus Association’s Community Network provides localized support, education and empowerment through community.
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Contact Us
Our support staff shares knowledge that comes from personal experience with hydrocephalus and from talking with people who live with the condition. We are here for you by phone and email. We also provide programs and support services to connect you with peers, volunteers and medical professionals.
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BLOG VIEW ALL
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Melissa Kopolow McCall Shared Hydrocephalus Patient Perspective on Capitol Hill
April 19, 2018McCall shared the challenges her family has faced throughout her daughter’s journey with hydrocephalus at the 9th Annual Medical Imaging Technology Showcase.
Posted In: HA Updates -
Congressional Action on ADA Legislation
April 12, 201843 brave Senators have stood up against legislative efforts to weaken the Americans with Disabilities Act, and we hope those impacted by hydrocephalus will take a moment to thank them for their efforts.
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Help us honor #MomFighters this Mother’s Day!
April 10, 2018All moms are heroes but mothers of children with hydrocephalus are #momfighters. These moms fight every day to ensure their child gets the life-saving care and support they need to live successful, healthy lives.
Posted In: HA Updates -
Choice of Treatment could Alter Risk of Hydrocephalus After a Subarachnoid Hemorrhage
April 4, 2018Hydrocephalus research is conducted all over the world. A recent study sheds light on the risk of developing shunted hydrocephalus after a specific type of brain bleed.
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Sleep Away Camp for Kids with Hydrocephalus!
March 21, 2018Camp Head Strong offers children and teens with hydrocephalus (ages 10-17) six days and five nights of summer fun, education, and social connections.
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Hockey Player with Hydrocephalus Wins Gold Medal in PyeongChang!
March 20, 2018Adam Page, living with hydrocephalus and spina bifida, is a member of the USA Hockey Team that won the Gold Medal in the 2018 Paralympic Winter Games in PyeongChang!
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Is an ETV an Option After Shunt Failure?
March 14, 2018Is an ETV an option after shunt failure? A recent review of 15 studies reported on the effectiveness of endoscopic third ventriculostomy (ETV) after shunt failure in children. Dr. Jenna Koschnitzky, National Director of Research Programs, summarizes the findings.
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Countdown to Conference: Tips on making it affordable!
March 6, 2018The 15th National Conference on Hydrocephalus, HACONNECT, takes place June 28-30, 2018 in Orange County, California. Join us! Here are tips to help make it affordable.
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ETV-CPC for the treatment of infants with hydrocephalus
January 31, 2018To determine if ETV-CPC provided a benefit compared to ETV alone or placement of a shunt, the HCRN decided to conduct a study which was recently published in the Journal of Neurosurgery: Pediatrics.
Posted In: HA Updates -
CSF Shunt Entry Site Trial
January 17, 2018The CSF Shunt Entry Site Trial has reached the 75% mark in patient enrollment, that is 385 patients enrolled!
Posted In: HA Updates
EVENTS VIEW ALL
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Minnesota Community Network Meeting
Come meet new friends, share your stories and learn about local & national hydrocephalus activities and how you can get involved!
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In Stitches – A Night of Laughs!
Get ready for Tracy Morgan and Friends!
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Jersey Shore Hydrocephalus Community Network Meet and Greet!
Learn, Share and Connect with One Another at the Jersey Shore Community Network Meet and Greet!
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Long Island, New York Education Day
One-day event designed to deliver education, support and networking opportunities for individuals living with hydrocephalus and their caregivers.
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Mommy Meet Up – Washington, D.C.
Are you a mom of someone with hydrocephalus? If yes, then JOIN US at Fire Works Pizza in Arlington, Virginia.
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Los Angeles Community Network Bowling Night
Join us for a fun night of bowling and networking!
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Social Strategies Meeting – Chicago
A social behavior specialist will be joining our group to discuss social strategies for children who struggle in social situations.
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Missouri – Hydrocephalus Awareness Night
Join us at the River City Rascals game as we come together to raise HYDROCEPHALUS AWARENESS
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15th National Conference on Hydrocephalus
We hope you will join us in Orange County, CA June 28-30, 2018 for the 15th National Conference on Hydrocephalus!
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Colorado Community Network Meeting
Learn, Share and Connect with One Another at Colorado Community Network’s Meeting!
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Sleep Away Camp for Kids with Hydrocephalus!
Camp Head Strong offers children and teens with hydrocephalus (ages 10-17) six days and five nights of summer fun, education, and social connections.
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Colorado Community Network Meeting
Learn, Share and Connect with One Another at Colorado Community Network’s Meeting!