Fiona kicks off a new blog series with words of advice and tips for those entering college next year. Join the blog series and be a part of the conversation!
Mutations in a number of genes coding for cilia structure, function, and regulation, have been associated with congenital hydrocephalus; these are called ciliopathies.
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.
Jonathan, who lives with spina bifida and hydrocephalus, shares discovering fencing as a form of exercise and competition.
The Dr. Seuss books and wooden “choo-choo” train in the waiting room were clear indicators that it was time for me to transition to a physician that treated adults.
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.
After much debate and negotiations, the American Health Care Act was pulled from the House floor before a vote and the Affordable Care Act remained in place.
The CSF Shunt Entry Site Trial has reached the halfway mark in patient enrollment – that is 224 patients enrolled!
Ever aspired to run a half or full marathon? Ever thought of running in honor of your loved one living with hydrocephalus? Do you have hydrocephalus and love to run?
Elizabeth, a Teens Take Charge guest blogger, shares how making a video about her journey with hydrocephalus has impacted her life and helped others.
The FDA notification regarding Medtronic Strata shunts have led to a number of questions from patients. Here’s what you need to know.
The Social Security Administration (SSA) provides support to disabled individuals through two separate disability benefit Programs: SSI and SSDI. Learn more.
Learn about the genetics of neural tube defects, which can lead to hydrocephalus.
Congratulations to our Top 15 WALK to End Hydrocephalus Teams throughout the country.
HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap.
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.
We are proud to announce Brainy Camps’ new camp for children living with hydrocephalus. Brainy Camps is a subsidiary of Children’s National Health System.
The Hydrocephalus Association encourages YOU to call Congress NOW about impending changes to Obamacare. Share your opinion and experiences. Shape the discussion!
Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.
Did you know that you can use AmazonSmile and support HA while you shop?
Congressional leaders are moving to repeal Obamacare per the campaign promise of President-elect Donald Trump. Here is an update on moves to date.
We are now accepting applications for our 2017 Hydrocephalus Association Scholarship Program.
A hydrocephalus patient of Doernbecher Children’s Hospital designs a hydrocephalus shoe in the annual Doernbecher Freestyle event with Nike.
Because of you and our generous donors that provided matching funds we were able to exceed our goal!
As we close out yet another banner year, we are grateful for all that we have been able to achieve through the support of our caring community.
We’re thrilled to announce a new partnership with The Mighty where stories of individuals living with hydrocephalus will be featured.
One man watched his father decline into a state of confusion until diagnosed with Normal Pressure Hydrocephalus. Then he found himself traveling the same road.
We have the chance to raise $80K in one day to support hydrocephalus research as well as programs and resources to support individuals and their families. #GivingTuesday is BIG this year!
Professional members enjoy the benefits of the association working on your behalf to ensure greater coordination of research, identify and reach the patient population and provide training and educational opportunities tailored to the needs of the professional community. Join us today.
Olivia Maccoux shares her story and leads this year’s holiday drive to support the critical research work of the Hydrocephalus Association.
Read Genesis Espaillat first-person account of life with hydrocephalus, which she wrote in honor of September being Hydrocephalus Awareness month.
Fiona Wilcox, chair of the TTC Advisory Council, speaks at The College Board forum on attending college with a chronic medical condition.
Support 21st Century Cures Act (Cures), a bill that could change the lives of many patients by providing funding for medical research. Urge Congress to pass the Cures Act before the end of this year!
Learn about how Dr. Hannah Tully is uncovering risk and protective factors associated with the development of PHH, and the results of a large retrospective study she recently presented.