Parent Blog
Sevi: A Story of Hope and Brotherly Love
When Sevi was first diagnosed with hydrocephalus, Tiana and Pete Chavez remember feeling terrified. But their fear quickly turned into a desire to help other children in need.
Announcing Our 2018 Hydrocephalus Association Scholarship Recipients!
The Hydrocephalus Association (HA) is pleased and honored to announce our 2018 Hydrocephalus Association Scholarship Recipients.
Watch Recorded Sessions from HA CONNECT 2018!
Miss the 15th National Conference on Hydrocephalus, HA CONNECT? Recordings of the 19 live streamed sessions are now available! Register as a virtual attendee for $20 to access the 19 recordings!
FREE WEBINAR: New Results on the Genetic Causes of Congenital Hydrocephalus
Please join the Hydrocephalus Association and Dr. Kristopher Kahle, Assistant Professor of Neurosurgery and Pediatrics at Yale School of Medicine, to learn about the new results from his research on genetic causes of congenital (developmental) hydrocephalus.
Join us as we say #NOMOREBS!
Brain surgery should not be the only treatment option for the over 1 million Americans living with hydrocephalus. Join the Hydrocephalus Association is standing up to say #NOMOREBS – #NOMOREBRAINSURGERIES – with our national awareness campaign.
Conference Hotel SOLD OUT! New Hotel Announced.
Due to the great number of conference attendees already registered for HA CONNECT this year, hotel rooms at the conference hotel are now completely sold out.
Is an ETV an Option After Shunt Failure?
Is 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.
Countdown to Conference: Tips on making it affordable!
The 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.
It’s Time to #StopTheCap on PT, OT and Speech Language Services
There is a $2,010 cap on PT, OT, and/or Speech therapy services for patients on Medicare. After they hit $2,010, Medicare will no longer cover the therapy costs and many patients cannot continue with their needed therapies. We can #StopTheCap.
CSF Shunt Entry Site Trial
The CSF Shunt Entry Site Trial has reached the 75% mark in patient enrollment, that is 385 patients enrolled!
Announcing National Conference Financial Aid
The Hydrocephalus Association is pleased to announce a financial aid program for the 15th National Conference on Hydrocephalus which will be held in Orange County, California June 28-30, 2018.
Conference Program Available!
The Hydrocephalus Association staff and the program planning committee are happy to announce the release of our conference agenda for the 15th National Conference on Hydrocephalus, HACONNECT!
Conference Registration is OPEN!
Registration for our 15th National Conference on Hydrocephalus is OPEN! Join us in Orange County, California, June 28 – 30, 2018.
Tools To Help Patients With Hydrocephalus Make Informed Decisions About Their Health Care.
Dr. Thomas Beez and Dr. Hans-Jakob Steiger from the Heinrich-Heine-University in Düsseldorf, Germany have developed a new health care quality metric for shunt surgeries.
2018 Scholarship Cycle OPEN!
We are now accepting applications for our 2018 Hydrocephalus Association Scholarship Program.
Department of Defense Funds Two Research Studies on Hydrocephalus
Department of Defense funding of two hydrocephalus researchers reflects the success of the Hydrocephalus Association’s Research and Advocacy Initiatives.
Tax Issues that Impact Our Community
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!
Adult Hydrocephalus Clinical Research Network (AHCRN) Update
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.
Tax Overhaul may Affect Charitable Giving and Non-Profits
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.
Interview with Olivia Bell, Cognitive Therapist – Part 2
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.
A Possible Cut in Hydrocephalus Research Funding from Capitol Hill
Congress is currently debating a bill that could have major implications for hydrocephalus research through the Department of Defense CDMRP program.
Preliminary results from the International Infant Hydrocephalus Study
There are two common treatment options available for infants that suffer from Aqueductal stenosis: implantation of a shunt or an endoscopic third ventriculostomy
Reflections From “Boozle Bear Sew-a-Thon” Event Participant
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!
Get to Know Our Conference Host City
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 Vision to End Hydrocephalus after a Brain Bleed
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.
From Patient to Progress: New insights into preventing shunt blockages
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
Meet our Conference Team!
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
Book Your Hotel for Conference!
Housing is open for the National Conference on Hydrocephalus which will take place on June 28-30, 2018 at the Renaissance Newport Beach in Orange County, California. Book your hotel!
New Theories in Posthemorrhagic Hydrocephalus
A recent study expands these results to posthemorrhagic hydrocephalus in premature infants. Please take a moment to read more about this important research.
Interview with Olivia Bell, Cognitive Therapist – Part 1
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.
Graham-Cassidy Healthcare Bill
Time to take action! Information on how the Graham-Cassidy bill will impact health services in your state and individuals with pre-existing conditions.
Department of Education Considers Modifications to Special Education
Submit your comments detailing why the Department of Education should preserve regulations supporting Special Education.
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!
How I decided to have shunt surgery
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
Announcing Our 2017 Hydrocephalus Association Scholarship Recipients!
HA funds a record number of 31 Scholarships thanks to the Abbene Family!
Hydrocephalus and Sleep
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.
New Study Seeks to Improve Outcomes After a Brain Bleed
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.
The Importance of Environmental Enrichment
Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.
Cognitive Therapy for NPH Patients
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.
2017 Every Member Campaign
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!