“My goal is for Adora to be successful and get every opportunity that we do. Because there is no cure, I will work until one is found. I want to be as involved as I can be.”
By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!
The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.
Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.
Because of the country’s high numbers of children with hydrocephalus, doctors, including Dr. David Limbrick of St. Louis Children’s Hospital, traveled to Uganda so they could learn the technique. Two years ago, Limbrick traveled 8,000 miles to the East African country for more than a week of intensive training.
The National Conference on Hydrocephalus takes place June 16 – 19th in Minneapolis, Minnesota. Join us! Here are tips to help make it affordable.
Hydrocephalus Teens Take Charge Mentor Task Force member offers advice on how to tackle the college application process and shares insight from her personal experience.
TTC Blogger Madeleine Darowiche shares her insights about the challenge of accepting yourself and where you are today, in order to grow tomorrow.
SAVE THE DATE: The 14th National Conference on Hydrocephalus will take place in Minneapolis, Minnesota, on June 16-19, 2016! Our patient-centered conferences empower all of us to understand, seek out and put into place the care, programs and services that will meet our needs now and well into the future.
TTC Member Megan Rivkin challenges young people to get involved in advocating and fundraising to increase research efforts and public awareness of hydrocephalus.
Is my child’s shunt in failure or is it just a temperature? In her video blog, Debby gives tips on how to figure it out and in trusting your “shunt sense.”
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.
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!
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!
Dr. Daniele Rigamonte, director of the Department of Neurosurgery’s stereotactic radiosurgery at Johns Hopkins, shares his vast knowledge of Normal Pressure Hydrocephalus in a newly published book, “Adult Hydrocephalus.” In the book he sites a 2007 study he led that highlights the potential national cost savings to proper timely diagnosis of NPH by the medical community.
The Sheboyganpress.com shares the story of the Harlin family who recently adopted two children from the Ukraine, one who has cerebral palsy and hydrocephalus, among other conditions.
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) in partnership with Boston Children’s and the International Federation for Spina Bifida and Hydrocephalus (IF) co-hosted the Spina Bifida and Hydrocephalus Partner Engagement Meeting April 22, 2014. The meeting marked the first ever discussion among the 21 organizations in attendance to advance spina bifida and hydrocephalus prevention and care. The Hydrocephalus Association was in attendance.
In this installment of the Hydrocephalus Association’s video blog series, Through a Mother’s Eye’s, Debby Buffa addresses the question of how to deal with the fear and uncertainty experienced by parents and caregivers supporting a loved one with hydrocephalus.
The National Conference on Hydrocephalus offers parents an opportunity to connect with other parents, speak directly with experts on various topics about raising a child with hydrocephalus – social, emotional, educational, financial, and medical – and watch their children interact with other children living with hydrocephalus. Join us in Portland, Oregon, July 9-11, 2014.