HA Blog
Physical Therapy Tips for NPH Patients
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.
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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.
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The Importance of Environmental Enrichment
Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.
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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.
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A Letter of Love to My Son With Hydrocephalus
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.
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Ciliopathies and their Role in Congenital Hydrocephalus
Mutations in a number of genes coding for cilia structure, function, and regulation, have been associated with congenital hydrocephalus; these are called ciliopathies.
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Tackling Obstacles to Finding Care for Young Adults with Hydrocephalus
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.
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En Garde! The Sport of Fencing and Hydrocephalus
Jonathan, who lives with spina bifida and hydrocephalus, shares discovering fencing as a form of exercise and competition.
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My Transition from Pediatric Care to Adult Care
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.
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Over 500 Adult Hydrocephalus Patients Enrolled in Registry
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.
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Obamacare Remains the Law of the Land
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.
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CSF Shunt Entry Site Trial
The CSF Shunt Entry Site Trial has reached the halfway mark in patient enrollment – that is 224 patients enrolled!
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Ever Wanted to Push Yourself to RUN?
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?
Read MoreOlympic Gymnast Raises Hydrocephalus Awareness
Olympic Gold Medalist Laurie Hernandez Visits Local Pelham Gymnastics Center at event benefiting Legacy Gymnastics and the Hydrocephalus Association.
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How Hydrocephalus has Impacted My Life: One Teen’s Story
Elizabeth, a Teens Take Charge guest blogger, shares how making a video about her journey with hydrocephalus has impacted her life and helped others.
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Hydrocephalus Advocates Join Rare Disease Week
HA staff were joined by members of our Hydrocephalus Action Network (HAN) to represent our hydrocephalus community in Rare Disease Week.
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Medtronic Addresses FDA Recall for Strata™ II/Strata™ NSC and StrataMR™ valves
The FDA notification regarding Medtronic Strata shunts have led to a number of questions from patients. Here’s what you need to know.
Read MoreWorld 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…
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Hydrocephalus and Disability Benefits
The Social Security Administration (SSA) provides support to disabled individuals through two separate disability benefit Programs: SSI and SSDI. Learn more.
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Neural Tube Defects (NTD)
Learn about the genetics of neural tube defects, which can lead to hydrocephalus.
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