hydrocephalus

Connection Found Between Congenital Hydrocephalus and a Genetic Defect

Researches from the Texas A&M Institute of Biosciences and Technology have found a connection between hydrocephalus and a genetic defect, a finding that may eventually lead to treatments for this form of hydrocephalus.

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I Smile Because You Are My Sibling…

The relationship between siblings is complex and sometimes even…shall we say… strained, but there is a powerful, unbreakable bond that endures through the best and hardest of times. Teens Take Charge (TTC) Advisory Council Members, Harrison Silver and Alexis Rocciola, share a special message to their siblings in our National Siblings Day blog honoring a special group of loved ones in our lives – brothers and sisters.

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New Gravitational Shunt Valve Hits Market

Aesculap introduces a new gravitational shunt valve that allows for different pressure settings for the lying and the upright positions. The Miethke proSA valve is implanted in combination with fixed or adjustable valves.

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International Conference on Spina Bifida and Hydrocephalus

The International Federation for Spina Bifida and Hydrocephalus (IF) hosts it’s 24th international conference “Unite and Share” on June 28 and 29, 2013, in Izmir, Turkey. The conference will bring together healthcare professionals and individuals with spina bifida and hydrocephalus to share the latest knowledge and exchange their experiences.

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Teen Voices: Thankful I Found Teens Take Charge

From fundraisers, awareness and advocacy events to sharing personal stories and experiences on our website and social media networks, teens and young adults across the country are banning together to create a network of support for each other. Madeleine Darowiche shares how Teens Take Charge has benefited her life.

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Looking Back…Moving Forward: Commemorating 30 Years

Over the last 30 years, the Hydrocephalus Association has significantly impacted the health care and scientific communities as well as the lives of individuals affected by hydrocephalus. We look back on the last 30 years presented in a timeline of our significant milestones.

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Announcing Our 2013 Scientific and Medical Review Committee

The Hydrocephalus Association is excited to announce the formation of our 2013 Scientific and Medical Review Committee (SMRC) for our current grant opportunity in partnership with the Rudi Schulte Research Institute.

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Hydrocephalus Association at 30

In 1983, a small group of parents of children with hydrocephalus living in the San Francisco Bay area came together seeking community and support. Thirty years ago could this group of determined and committed individuals have imagined that the Hydrocephalus Association would become the nation’s largest and most widely respected advocacy group dedicated to hydrocephalus?

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Researchers Find Link Between Climate and Brain Infection

Researchers are the first to demonstrate that climate can cause brain infection leading to post-infection hydrocephalus. The research took place in Uganda where rainfall rates were found to be a determinate factor in infection rates in infants.

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Dr. Michael Williams Named President of the International Society for Hydrocephalus and Cerebrospinal Fluid Disorders

The Hydrocephalus Association would like to congratulate Dr. Michael A. Williams on being named president of the International Society for Hydrocephalus and Cerebrospinal Fluid Disorders (ISHCSF). Dr. Williams is a member of the Hydrocephalus Association’s Medical Advisory Board.

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Have a Heart Home Builds Custom Home for Girl with Hydrocephalus

The Parker family received an early special holiday gift when the Have A Heart Home chose their family from a pool of applicants for a custom-built home in Utah. They were selected after they shared their moving story about their daughter, Emylie, who was born with myelomeningocele spina bifida, Arnold-Chiari II malformation and hydrocephalus.

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Local South Florida Family Interviewed by Local News Channel

The Rodger’s family are interviewed by ESPN760/WPTV NBC/West Palm Beach about Alex’s journey with hydrocephalus and the South Florida WALK, which took place on November 10, 2012.

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NCIS Creator’s Hydrocephalus Being Used in Court Case

The Hollywood Reporter reports on Donald Bellisario’s current court case suing CBS for revenue owed to him when he was denied the opportunity to work on NCIS: Los Angeles as outlined in his contract. CBS is requesting his medical records around his recent treatment for hydrocephalus to determine if he was able to do the work due to his medical condition.

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A Gift of Legacy: Join the Fudge Solomon Legacy Society

The Legacy Society provides an opportunity for supporters to ensure the organization’s research, support, advocacy and education work continues by placing a “future” gift to the Hydrocephalus Association in their wills, trusts or estate plans. As a member, you will demonstrate your commitment to HA’s mission to eliminate the challenges of hydrocephalus and help to […]

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New Cause of Hydrocephalus Discovered

The IowaNow reports that researchers at the University of Iowa Graduate Program in Neuroscience have discovered a new cause for hydrocephalus. Working with mice, the researchers identified a defect in the development of immature brain cells.

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College Graduates Celebrates with the Medical Team of Comer Children’s Hospital

Kimi Sorensen and her mom promised to have a party for the doctors, nurses and staff at the University of Chicago Medicine Comer Children’s Hospital when she graduated from college. And she did!

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12-year-old Girl Interviewed by NBC on Her Journey with Hydrocephalus

12-year-old Gabriela Montes Garzon is interviewed with her mother, HA’s own Amanda Garzon, about her journey with hydrocephalus from being a preemie in the NICU to a 6th grader at The Diener School.

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Video Interview with Dr. Warf on his MacArthur Foundation Fellowship Award

The NINDS NIH posted a video on Dr. Benjamin Warf and his MacArthur Fellowship Award for his contribution to hydrocephalus research and treatment.

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Drug Shrinks Brain Tumors and Aids in Resolution of Hydrocephalus

A drug originally developed to prevent the rejection of transplanted organs has now been shown to dramatically reduce a particular kind of brain tumor in patients with tuberous sclerosis complex (TSC). Treating the tumor allows patients to also see improvement in the reduction or even elimination of hydrocephalus.

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Seizures and Hydrocephalus

November is Epilepsy Awareness month and the Hydrocephalus Association would like to address the topic of hydrocephalus and seizures. Seizures are not an uncommon occurrence in people with hydrocephalus. However, no correlations have been found between the number of shunt revisions or the site of shunt placement and the risk of developing seizures.

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A Gift of Encouragement: Expand HA’s Support & Community Education

When you are affected by hydrocephalus, sometimes the challenges can be overwhelming. You might have asked these very questions yourself: How do I find a doctor I can trust? What are my treatment options? What are the risks involved with shunt surgery? What are the symptoms of a shunt malfunction? Where can I find emotional support? Every day, people contact the Hydrocephalus Association to find answers and connect with others who can help them manage the ups and downs of living with hydrocephalus.

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Children’s Hospital in Houston Performs ETV/CPC Surgical Technique to Treat Hydrocephalus

Children’s Memorial Hermann Hospital in Houston, Texas, introduces the surgical treatment option of endoscopic third ventriculostomy (ETV) with choroid plexus cauterization (CPC) for hydrocephalus.

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Legendary Colombian Folk Musician Passes After Battle with Hydrocephalus

Colombian folk music legend Lizardo Diaz passed away at the age of 84 in Bogota after a long battle with hydrocephalus.

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APDC Helps Fund Self-Monitoring Shunt

The Atlanta Pediatric Device Consortium (APDC) is helping fund the development of a shunt that can be monitored wirelessly.

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Local ABC Affiliate Airs Announcement for the Birmingham WALK

The local ABC 33/40 news station in Birmingham, Alabama, aired a public service announcement hosted by Charles Daniel, meteorologist for the 5th Annual Birmingham Hydrocephalus WALK scheduled for Sunday, November 11, 2012.

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WWE Superstar John Cena Makes Tampa Child’s Wish Come True

The Kids Wish Network and the WWE allowed Maurice Wilson’s dream of meeting his favorite WWE wrestler, John Cena, come true. Maurice has had hydrocephalus since birth.

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The Riverfront Times Dispels Local St. Louis Legend

Local St. Louis teens had been seeking out a mythical family with large heads. Reporter Leah Greenbaum dispels the myth with a concise explanation of hydrocephalus.

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New Study in Iraq Finds Elevated Rates of Hydrocephalus and Neural Tube Defects

The Foreign Policy online magazine reports on a study by the University of Michigan’s Department of Obstetrics and Gynecology examines the prevalence of birth defects in the Iraqi cities of Basra and Fallujah. The study found that in Basra, hydrocephalus occurred six times more frequently in infants than compared to California rates of .6 infants of every 1,000 live births. Basra also had the highest ever reported number of incidences of neural tube defects (NTDs), brain and spinal cord conditions – 12 per 1,000 live births.

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John Evans, NYC Artist, Dies at 79

John Evans, a New York City East Village artist, dies at 79. Evans was best known for his collages which used materials ranging from newspaper clippings, business cards, product stickers and ticket stubs to bits of ephemera or random photos found on the East Village streets. Evans also had hydrocephalus.

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Papilledema, Vision Loss, and Hydrocephalus

Papilledema is an optic disc swelling that is secondary to elevated intracranial pressure around the brain associated with hydrocepahlus.The biggest concern with increased intracranial pressure is there is always the potential for visual loss secondary to the papilledema.

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Our Girl, Lexi, Sees Stars!

Teen with hydrocephalus selected by the Ellen Degeneres Show to be a part of the audience in the October 25th episode with Taylor Swift.

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Class Action Lawsuit Settlement Eases Rules for Some Medicare Coverage

A proposed settlement of a nationwide class-action lawsuit eliminates the requirement that beneficiaries show a likelihood of medical or functional improvement before Medicare will pay for skilled nursing and therapy services.

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Hydrocephalus Patients and Caregivers Increasingly Turning to the Internet

Researchers at Children’s of Alabama and the University of Alabama at Birmingham found that adults caring for children with hydrocephalus reported greater regular use of the Internet than the general population (91.7 percent compared with 74 percent).

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Sherman Alexie Talks to TIME Magazine About His New Book, Blasphemy

Sherman Alexie is interviewed in the recent edition of TIME Magazine about his new book, Blasphemy. Mr. Alexie is an award-winning author and also has hydrocephalus.

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Shunting of NPH Does Not Inhibit Dementia Onset for All Patients

A new study from Kuopio University Hospital, Finland found that around half of patients with idiopathic normal pressure hydrocephalus (iNPH) will develop dementia, despite responding to shunting. Many patients had other contributing factors.

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Surgical Procedures Improves Lives for Infants with Hydrocephalus

Seattle Children’s Hospital details the successful surgical procedure, Choroid Plexus Cauterization (CPC), performed by Dr. Samuel Browd, pediatric neurosurgeon and Director of Hydrocephalus at Seattle Children’s Hospital, on Skyler Crow now 10 months old.

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Dr. Jay Wellons Recruited to Lead Vanderbilt’s Division of Pediatric Neurosurgery

Dr. Jay Wellons has been recruited by Vanderbilt to lead their Division of Pediatric Neurosurgery. Dr. Wellons will continue his Investigator role with HCRN.

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University of Tennessee Alumna Raises Awareness for Chattanooga WALK

Chara Crowley McLaughen, a University of Tennessee (UTC) alumna, is highighted by her alma mater UTC Chattanooga, for her dedication to organizing the 2nd Annual Greater Chattanooga Hydrocephalus Association WALK 2012 which will take place at Coolidge Park on Saturday, October 27th.

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New Social Network for Kids with Special Needs

CBS Los Angeles reports on a new closed social networking site created by the Starlight Children’s Foundation. The site allows kids with special needs to connect, chat online, and support each other through various issues.

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First World Spina Bifida and Hydrocephalus Day on October 25, 2012

The first World Spina Bifida and Hydrocephalus Day sponsored by the International Federation for Spina Bifida and Hydrocephalus (IF) will be officially celebrated on October 25, 2012. The theme is “UNFOLD their potential, (Y)our Return on Investment.”

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