hydrocephalus

Orin Hatch Rare Disease Caucus

Hydrocephalus on the Hill

Philip Brooks, a teen HA community member, recounts his experience during Rare Disease Week, when hundreds of people gathered to advocate for hydrocephalus and other conditions.

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Dallas Hydrocephalus WALK Family

Hawk and Why I WALK

A member of the hydrocephalus community reflects on the birth of his son with hydrocephalus and how it has affected his life.

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Royal Duchess to Attend Shine’s Golden Anniversary Launch

The Duchess, who has been the patron of the charity since 1973, will meet some of the charity’s members among the 250 delegates attending the launch.

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MOI Opens Special Camp for Children with Nerve Issues

Muhimbili Orthopedic Institute (MOI), in collaboration with Friends of Children with Cancer (FOCC), has launched a special camp to conduct operations for the children with neurosurgical problems.

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Recognizing NPH, Reversing Dementia

A certain type of hydrocephalus can cause a person to lose the ability to walk and talk normally. And because the symptoms are similar to dementia or Parkinson’s, it’s a condition that can be easily overlooked. But if doctors properly diagnose N.P.H. , they can often reverse it.

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6-Year-Old to be Hydrocephalus Awareness Ambassador

Elyse was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness,” for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States.

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Singer and Brain Cancer Survivor Uses Music as Therapy

Angel Raynoso spent his 30th birthday in the hospital. The day before, he’d had a seizure, was rushed to intensive care and had emergency surgery to relieve pressure on his brain.

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Thousands of Seniors Being Misdiagnosed

Older Americans around the country are being misdiagnosed with Alzheimer’s and Parkinson’s. Normal Pressure Hydrocephalus can display similar symptoms, but is treatable.

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Rwandan Hospital Leading the Way in Treating Hydrocephalus

Gikonko is the only health center with facilities to treat the medical condition; other medical centers treat hydrocephalus, but most of them refer patients to Gikonko Health Centre where specialists are based.

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11-Year-Old gets his Wish Granted

Elementary school student Aiden Tanz was given an all-expense paid trip to Orlando, Florida for him and his family through Make-A-Wish Foundation. The Tanzes visited three parks: Walt Disney World, Universal Studios and Sea World.

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Doctors Find Possible Link Between Zika and Hydrocephalus

Doctors in Brazil have discovered hydrocephalus in two babies with congenital malformation. Some suspect the ongoing Zika pandemic in the country caused these cases.

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New Computerized Rehab for Brain Injuries

Researchers have shown that computerized cognitive rehabilitation (a program to help brain-injured or otherwise cognitively impaired individuals to restore normal functioning) can improve attention and executive functioning in brain injury survivors including traumatic brain injury (TBI) and stroke.

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TBIs: the Road to Recovery

An expert on traumatic brain injuries explains the recovery and treatment options.

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Australia Continues to Push for Registry

An Australian family has welcomed the aid of Senator Bob Day in pushing for a national shunt registry. One of Day’s staff members lost a child to the complications of hydrocephalus.

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Young Woman Prepares for 121st Surgery

A Minnesota 20-year-old will undergo here 121st surgery to replace an infected shunt.

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HA-Nominated Advocate Joins Department of Defense Medical Research Peer Review Board

Barrett O’Connor, a Hydrocephalus Association-nominated patient advocate, is serving on the latest panel reviewing applications for medical research at the DoD.

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How Mobile Health Apps are Making a Difference

The mobile health industry, along with remote monitoring and telehealth systems, has a wide impact on reducing hospitalizations and emergency room visits throughout the healthcare spectrum by improving communication and care coordination among specialists, doctors, nurses, and others.

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WNYH Announces Western New York WALK

Western New York had an amazing WALK on Saturday, September 19th. WNYH helped promote the WALK during a news segment. Adam Page served as the honorary chair.

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New Research Initiative to be Launched at HA’s Vision Dinner

The annual Vision Dinner held in New York City will unveil the new Hydrocephalus Association Network for Discovery Science (HANDS).

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Identifying Best Candidates For Spina Bifida In-Utero Surgery

A new study found that fetuses with enlarged brain ventricles are more likely to get a second surgery after birth.

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A True Champion

Cohyn Wells, who is nine years old and lives with spina bifida, hydrocephalus and Chiari malformation, has been named Champion Child for the Children’s Hospital Foundation.

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UNCP Hopes to Push TBI Research Forward With Help of Recent Grants

University of North Carolina has been awarded a grant to fund a study for neurotoxin action. Lead Scientist Dr. Bahr hopes the recent grants will push forward traumatic brain injury program and Alzheimer’s research.

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Seven States Join Congress in Declaring September Hydrocephalus Awareness Month

Local volunteers joined forces with elected state representatives in Connecticut, New York, Tennessee, Virginia, South Carolina, Colorado and Illinois to proclaim September as Hydrocephalus Awareness Month.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Learning from Experience – A Reflection on Self-Acceptance as a Starting Point for Growth

TTC Blogger Madeleine Darowiche shares her insights about the challenge of accepting yourself and where you are today, in order to grow tomorrow.

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Concussions: A Serious Problem for Students

Kathryn Theisen explains the importance of teachers, counselors, medical professionals and students working to support students suffering from concussions.

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Hydrocephalus Association Scholarships

Congratulations to Our 2015 Scholarship Recipients!

We are pleased to announce our 2015 Hydrocephalus Association Scholarship Recipients!

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Hydrocephalus Research

Scientific Networks are Changing the Research Landscape

Together the HA-funded HCRN, AHCRN and HANDS are changing how hydrocephalus research is conducted and accelerating research progress.

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Survey

How Can We Serve You Better?

We continually strive to provide the best support and education services, and most current, comprehensive information and resources to assist our community. Take a brief survey and help us develop programs and services to better fit your needs.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

The First Year of College: An Honest Look at My Experience

Teens Take Charge Mentor Task Force Member, Madeleine Darowiche, shares the highlights and challenges of her first year away from home at college.

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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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Bryant Williams, adult living with hydrocephalus

Learning to Date Me

Bryant, our new guest blogger, shares openly about the unconditional support of his fiancee and resilience of their relationship as he lives with hydrocephalus.

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Hydrocephalus Association Webinar Speak Up!

Upcoming Webinar – Speak Up! Owning Your Condition

In this webinar, attendees will learn how to educate others about their condition, receiving tips and practical ways to share their story. They will also learn how to take charge and advocate for themselves and the condition.

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Local 5K Benefits Boy with Hydrocephalus

The We Care 5K in CT will benefit the family of Jared Carreras, the son of the rapper whose video went viral on social media.

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Hydrocephalus mother video blog

Through a Mother’s Eyes: Raising Two Children with Hydrocephalus

In this installment of our video blog series, Through a Mother’s Eye’s, Debby Buffa shares her personal journey of raising two daughters with hydrocephalus. Make sure to read the list of resources included below the video.

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Hydrocephalus Video Blog Parents

Through a Mother’s Eyes: School and Hydrocephalus

In this installment of our video blog series Debby offers tips and suggestions on how to prepare yourself and your child’s educational team for school.

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Hydrocephalus Teens Take Charge Guest Blogger

Meet Emily Lucht . . . Fellow Traveler on the Teen Hydrocephalus Journey

Meet our newest TTC Blogger Emily Lucht! She shares her journey’s extra baggage. Read what she means and let’s start a conversation using #TalkTTC.

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Hydrocephalus Physician's Directory

Is Your Doctor In Our Directory?

Do you have a neurosurgeon, neurologist, or neuropsychologist that you LOVE? Invite your doctor to join the Hydrocephalus Association’s Physician Directory!

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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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HA WALKS – Making New Friends & Raising Awareness

In her monthly blog, TTC member Madeleine shares how participating in HA WALKs in Florida helps her find new friends, raise awareness and funds, and have fun too!

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Boozle Bear, hydrocephalus bear

Meet Boozle Bear! An Educational Tool Handmade by Volunteers

Boozle bear, who has hydrocephalus, is an educational tool used to demonstrate how shunting works. Read about this amazing bear and how you can help make him!

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