Patient and charitable groups are fighting on many fronts to make necessary changes to the Tax Reform bill. Learn about the issues that impact our community and take action today!
Last week the Adult Hydrocephalus Clinical Research Network (AHCRN) met in Salt Lake City, Utah to discuss the progress and next steps for the network.
Congressional efforts to overhaul the tax code could have major implications for charitable giving and non-profit budgets and could lead to reductions in research, advocacy, outreach, and other services.
This part of the interview touches on neuropsychology, debunking some misunderstandings about cognitive therapy (CT), some advice Olivia had for NPH patients and spreading the word about CT.
Congress is currently debating a bill that could have major implications for hydrocephalus research through the Department of Defense CDMRP program.
There are two common treatment options available for infants that suffer from Aqueductal stenosis: implantation of a shunt or an endoscopic third ventriculostomy
The Boozle Bears were fun to help make, and I hope they help children understand their condition, as well as raise money for the research I will one day be conducting!
For those that are traveling we hope you will take a couple days to explore this wonderful host city for our conference and enjoy the world-famous theme parks and, stunning beaches, designer shopping, delightful fairs and so much more.
The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.
While shunt implantation is a typical treatment option for people with hydrocephalus, there have been surprisingly few advances to decrease shunt failure rates since the 1950s
HA is pleased to announce some of the brightest minds in the field who are generously offering their time, expertise and talent in planning the 15th National Conference on Hydrocephalus
Housing is open for the National Conference on Hydrocephalus which will take place on June 28-30, 2018 at the Irvine Marriott in Orange County, California. Book your hotel!
A recent study expands these results to posthemorrhagic hydrocephalus in premature infants. Please take a moment to read more about this important research.
This is the first part of Trish’s interview with cognitive therapist Olivia Bell. It covers who benefits from CT, how to find a therapist, and how to get the most out of the therapy appointments.
Nominate a dedicated Neuroscience Nurse with demonstrated excellence in neurosurgery, specifically with hydrocephalus, for the Mary Decker Mentorship Award!
Trish was diagnosed with NPH in 2015 and had shunt surgery then. Thanks to the surgery and several kinds of therapy, Trish is now back to doing what she loves, including a killer step aerobics class at her gym and singing with her husband in a community chorus
Sarah has a passion for improving her and other’s sleep quality. Having suffered from sleep deprivation and feeling the effects across her entire life, she realized the importance of optimizing her sleep.
Germinal matrix hemorrhage (GMH) is a brain bleed that occurs in approximately 3.5 per 1000 live births and remains a leading cause of mortality and lifelong morbidity in premature infants.
If you have Normal Pressure Hydrocephalus (NPH) you might find Cognitive Therapy useful. Trish Bogucki explains what it consists of and shares some tips for others who might be in the same boat she was in.
Your membership support of HA helps newly diagnosed families across the nation who are seeking our support and encouragement.
Read how your membership gift is making an impact!
The day I was told you had hydrocephalus my heart felt like it was breaking, not because I felt there was anything wrong with you, but because I was afraid you would have to endure pain.
By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!
Summit unites a range of stakeholders to begin development of an action plan to create a system for transitional care for young adults with hydrocephalus.
HA is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and NPH.
The FDA notification regarding Medtronic Strata shunts have led to a number of questions from patients. Here’s what you need to know.
The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.
Four. That is how many different hospitals I visited trying to transition from a pediatric to an adult neurosurgery program in the midst of a shunt malfunction.
Hydrocephalus has been shown to have multiple causes, including numerous genetic origins. Dr. Jenna Koschnitzky explores genetic mutations in a three blog series.
The HA Transition Summit will discuss ways of improving the transition from pediatric to adult-centered medical care for patients with hydrocephalus.
Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.