HA Updates
Hockey Player with Hydrocephalus Wins Gold Medal in PyeongChang!
Adam 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!
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.
ETV-CPC for the treatment of infants with hydrocephalus
To 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.
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.
A Writer’s World
Blair Patrick Schuyler talks about the challenges and elation of writing his first book, “Adolescence Interrupted”, and on growing up with hydrocephalus..
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.
Letter from Longeviti Neuro Solutions
Longeviti Neuro Solutions would like to thank the incredible number of people who participated in our recently distributed survey.
Hydrocephalus is Not A Limitation
I can remember my first Hydrocephalus Conference in 2004, the speaker said to those of us with a shunt, “look around, you are the majority.” I cried.
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!
New Physician’s Directory
The Hydrocephalus Association is excited to announce the launch of our new Physician’s Directory.
Exercise Tips for NPH patients
I recommend finding an activity to help you challenge both your mind and body, and have fun while doing it!
Annual Membership Campaign
Roadmap to a Cure is our commitment to invest $20 million by 2020 to accelerate hydrocephalus research, expand patient support services and raise public awareness about hydrocephalus.
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.
A Fundraising Story
It is interesting to see how many families truly are affected by hydrocephalus. It’s something a lot of people have never heard of… yet through social media, we connected with 4 different families all dealing with the same thing.
2017 Giving Tuesday
This Giving Tuesday your gift will be matched—dollar-for-dollar— up to $90,000 to support research to improve the treatment of hydrocephalus in children and adults, and to prevent and cure hydrocephalus!
TAKE ACTION! Help Veterans Receive Telehealth Benefits
Take action today to support moves in the Senate and the House to support telehealth medicine for our veterans.
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.
Boozle Bear Sew-a-Thon
Boozle Bears are used by doctors, nurses and parents to teach patients, old and young, about hydrocephalus and how shunting works.
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
Save the Date for Rare Disease Week on Capitol Hill: February 25 – March 1, 2018
There is much work to do to educate members of the U.S. House of Representatives and Senate on the impact of rare disease on patients and families in their districts.
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.
New Theories in Fetal-Onset Hydrocephalus
Current research suggests that a cascade of events involving cell junctions, the VZ, and the SVZ may be the cause of fetal-onset hydrocephalus and its accompanying neurological disorders.
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.