In the News

Stem Cell Mutations Linked to Hydrocephalus

Could a genetic mutation explain why some people with congenital hydrocephalus experience neurological problems? That’s what a new study by Dr. Kristopher Kahle of Yale University suggests. The study was recently published in the journal, Neuron, and highlighted by Yale News. Read the full article  

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What is Hydrocephalus?

Parents magazine published an in-depth article about hydrocephalus — it’s causes, symptoms and treatment. The article features quotes from HA’s National Director of Communications and Program Services, Amanda Garzon, as well as several other experts. Click here to view the article.

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No More BS: Finding a Cure

The Hydrocephalus Association’s NoMoreBS (No More Brain Surgeries) Campaign was highlighted recently by Everyday Health. The story offers an in-depth look at hydrocephalus and why so many people living with hydrocephalus undergo multiple brain surgeries. Click here to view the news article

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Those Battling Hydrocephalus Come Forward to Share Their Stories

When UFC fighter Ray Borg shared how hard it was dealing with his son’s hydrocephalus, away from the rest of his family in New Mexico, it brought together an entire community in Colorado dealing with this disease. Families from across Colorado started writing about their stories online and shared them with 9News Denver. They not only […]

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Martin County Student with Hydrocephalus Gets One Step Closer to His Swimming Goals

For 19-year-old Tomas Rodriguez, swimming is second nature. You might say that’s fitting or fate considering he was born with a medical condition that essentially translates to “water on the brain.” This week, he will head to Cincinnati to compete in a paralympic swim meet for a chance to win a national ranking and hopefully […]

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How Do You Upgrade an Archaic Biomedical Device? Make It “Self-Aware”

A new startup is trying to find a better way to detect shunt failure. Professors Ellis Meng and Tuan Hoang, both of the Department of Biomedical Engineering at USC Viterbi, thought it high time to invent a “self-aware” device that could inform doctors with a sense of the shunt’s condition in real-time. In 2013, they […]

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Study of Climate Change Could Lead to Understanding Future of Infectious Disease

Dr. Steven Schiff and his colleagues are studying climate change to better understand how to prevent infectious disease and the development of postinfectious hydrocephalus in developing countries.

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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!

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Simple Walking Test Helps Diagnose a Cause of Dementia

A surprisingly easy test of how people walk helps neurologists differentiate between two causes of dementia.

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Arkansas Tech University Family on the Road to a Cure

The Crouch family is leading fundraising efforts in Arkansas for the Northwest Arkansas WALK to End Hydrocephalus.

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Insurance Denials Block Woman with Hydrocephalus from Receiving Care

Insurance Denials Block Woman with Hydrocephalus from Receiving Care

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6 Year Old Finds Freedom Running

Abby Cahil has hydrocephalus. Despite the many daily challenges hydrocephalus can place on a child, Abby finds freedom through running. Read her story posted on Minnesota’s StarTribune. Click here to read the article.

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LA Kings Unite with Hydrocephalus Community to Raise Over $200K

The LA Kings Insider profiles our Los Angeles Hydrocephalus WALK and the incredible commitment of the LA Kings to standing with our hydrocephalus community.

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Elementary School Unites Around One of its Own

Pontiac Elementary School in South Carolina unites around one of it’s own students living with #hydrocephalus to help raise awareness.

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Minnesota Teen WALKS for Hope

Natalie​ offers an incredibly informative interview with Big Fish Lifestyle about living with hydrocephalus as a teen. This is a MUST READ!

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The Varying Impact of Hydrocephalus

Sarah Ann and Mikell highlight how hydrocephalus can impact each of us differently as they raise awareness on ABC4 Utah and invite Utahns to participate in the 9th Annual Salt Lake City Hydrocephalus WALK.

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Forbes Features Story on Team Hydro

Forbes features a story on the inspiration behind Team Hydro and their mission to fund hydrocephalus research. Pam Finlayson, a Team Hydro founder and a member of the Hydrocephalus Association Board of Directors, in interviewed with her sons, Peter and Sam.

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Long Island WALK featured on Local Radio Program

Mia Padron, our Long Island Hydrocephalus Association WALK Chair, is interviewed by Dr. Carlos on “In the Best Interest of Children” about the difficulties of diagnosing and living with hydrocephalus. Her interview starts about 5:30 minutes in.

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Indiana declares September Hydrocephalus Awareness Month

Sixteen States Join Congress in Declaring September Hydrocephalus Awareness Month

Sixteen states join the U.S. Congress in declaring September as Hydrocephalus Awareness Month.

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Chicago WALK Chair featured on MIX Matters

Chicago radio station 101.9FM The Mix featured Katie Cook, our Chicago Hydrocephalus Association WALK Chair, on their weekly radio show “MIX Matters” with Susan Wiencek.

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Benefits of Yoga for Brain Recovery

The Love Your Brain Foundation in Denver, CO, has specialized yoga workshops for survivors of traumatic brain injury (TBI).

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Brown University Study Suggests Window to Prevent Brain Injury

A study out of Brown University suggests that there may be a window for therapeutic intervention aimed at minimizing further damage after a traumatic brain injury (TBI).

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New Orleans Beauty Brand Benefits Toddler with Hydrocephalus

Ashley Sievert , a New Orleans makeup artist and beauty brand owner, will hold a benefit that will raise funds for a young Haitian=born toddler living with her adopted mother in the U.S.

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New Catheter for Hydrocephalus Shunt Seeking FDA Approval

The ReFlow shunt system from Alcyone Lifesciences is seeking FDA approval for the commercial resale after being successfully implanted in 4 patients in an ongoing study at Boston Children’s Hospital.

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A Business with Hydrocephalus as Part of Its Mission

Jason Spears started his hard cider company with a mission. At the heart of that mission is his daughter, Lucy, living with hydrocephalus.

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Study Finds Concussion in Student Athletes Requires Long-term Follow Up

A new study, whose abstract was released at the American Academy of Neurology meeting, finds that student athletes with concussions had less water movement, or diffusion, shortly after their injuries as compared to other players who had not had concussions. Click here to read the full article. 

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Kids Raise Funds for Others to Survive

Three children in Singapore with chronic health conditions are raising money for other children in dire financial need so that they can receive medical treatment. One of the children is a young boy has two shunts to treat his hydrocephalus.

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Olympic Gymnast Raises Hydrocephalus Awareness

Olympic Gold medalist Shawn Johnson East supported a fundraiser in Pelham, Alabama, to support the construction of a new gym and to benefit the Hydrocephalus Association.

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Ohio Baby Born with Rare Brain Condition Doing Well

Baby born with encephalocele has had his brain gently placed into the proper position and treated with a shunt.

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Canada Embraces New Brain Procedure for Hydrocephalus

Dr. Jay Riva-Cambrin of Alberta Children’s Hospital is featured in Calgary Metro for his use of the Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization in infants born with hydrocephalus.

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Seattle Boy Proves to be a Fighter

Tristen Pierce was born with a rare birth defect called rhombencephalosynapsis and has a shunt as part of his treatment plan. Despite numerous challenges, Tristen has proved to be a fighter.

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Coping with Normal Pressure Hydrocephalus

Ontario man shares his journey with Normal Pressure Hydrocephalus and the support he received to cope with the diagnosis.

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FDA Clears New MRI-Compatible Shunt

The Federal Drug Administration (FDA) cleared Medtronic’s StrataMR valve for the treatment of hydrocephalus. The valve is MRI- compatible in a full body scan.

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Shunt Surgeries Identified as Specific Risk in Hospital Readmission

A study finds specific risk factors following pediatric neurosurgery are associated with hospital readmission, including complications with shunt placement and infection.

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Million Dollar Market in Cerebrospinal Fluid Management by 2023

Transparency Market Research finds that by 2023, the market for cerebrospinal fluid (CSF) management, including the manufacturing and use of shunts and CSF drainage systems, will reach 1,840.5 Million.

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St. Louis Doctors Among Few Performing ETVs

Because of the country’s high numbers of children with hydrocephalus, doctors, including Dr. David Limbrick of St. Louis Children’s Hospital, traveled to Uganda so they could learn the technique. Two years ago, Limbrick traveled 8,000 miles to the East African country for more than a week of intensive training.

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Royal Duchess to Attend Shine’s Golden Anniversary Launch

The Duchess, who has been the patron of the charity since 1973, will meet some of the charity’s members among the 250 delegates attending the launch.

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MOI Opens Special Camp for Children with Nerve Issues

Muhimbili Orthopedic Institute (MOI), in collaboration with Friends of Children with Cancer (FOCC), has launched a special camp to conduct operations for the children with neurosurgical problems.

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Recognizing NPH, Reversing Dementia

A certain type of hydrocephalus can cause a person to lose the ability to walk and talk normally. And because the symptoms are similar to dementia or Parkinson’s, it’s a condition that can be easily overlooked. But if doctors properly diagnose N.P.H. , they can often reverse it.

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6-Year-Old to be Hydrocephalus Awareness Ambassador

Elyse was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness,” for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States.

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