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.
Hydrocephalus is a neurological condition caused by an abnormal accumulation of cerebrospinal fluid, resulting in pressure on the brain. There is currently no cure, but it can be treated.
Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF), resulting in pressure on the brain. It affects over 1 million Americans, ranging from infants to seniors.
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.
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.
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
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.
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.
Storytelling can be a powerful and influential advocacy tool in getting people to understand the breadth and depth of impact hydrocephalus has on individuals and families.Every person afflicted with Hydrocephalus has a story to tell.
The HCRN is fortunate to have a team of hard working, experienced coordinators who are responsible for study start up, running the study, and wrapping things up once a study ends.
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
When it comes to treating balance issues that attend Parkinson’s and other brain and balance disorders such as hydrocephalus and aging, there’s only so much medication can do.
“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.”
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.
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.
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.
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.
World Birth Defects Day: Global Alliance calls for better prevention, care and research for Neural Tube Defects (NTDs) and Hydrocephalus
The PUSH! Global Alliance joins forces with over 70 participating organizations in promoting and increasing global awareness of birth defects on World Birth Defects Day.
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.
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.