“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.”
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.
A recently published study attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement.
By the time Trish was diagnosed with NPH and had shunt surgery, she had lost her ability to walk unaided, so her neurosurgeon gave her a prescription for physical therapy.
Are you concerned with provisions of the BCRA that could adversely affect your ability to maintain healthcare coverage? Learn how YOU can be sure your voice is heard.
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.
Contact your Senator TODAY and urge them to oppose the AHCA before voting ends on Friday. If passed into law, the AHCA as it currently stands would be devastating for individuals with preexisting conditions, like hydrocephalus, and millions of Americans.
Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.
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.
On April 10, 2017, the Hydrocephalus Association Board of Directors approved our position statements on key legislative issues. This is how we stand.
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.