In her October Teens Take Charge Blog, Madeleine Darowiche shares about a leadership retreat she attended and the lessons in courage and teamwork she learned.
In this installment of Debby’s video blog series, she discusses pregnancy and hydrocephalus, sharing from her personal experiences with her daughter, who has hydrocephalus, and the birth of her first grandchild.
Working with the Frisco Parks and Recreation Department, Frisco Commons was selected for the site of the inaugural 2014 Dallas/Fort Worth Hydrocephalus Association WALK which will take place on September 27, 2014.
Matt Kocsis, an entering senior at Cumberland Valley High School, shares his hydrocephalus journey of 98 brain surgeries, three years in a wheelchair, and his enduring hope for better treatment options and a cure. He completed the 2014 Central PA Hydrocephalus Association WALK in Hershey, PA.
The Hydrocephalus Association’s National Conference on Hydrocephalus offers adult attendees an opportunity to find the information, resources, and support they need to live confidently with their condition. Join us in Portland, Oregon, July 9-11, 2014.
Early bird registration rates for the Hydrocephalus Association’s 13th National Conference on Hydrocephalus have been extended through June 16th! Register today! Visit www.hydrocephalusconference.org.
Timothy Vogel, MD, will join the Robert H. Pudenz Lectureship scientific research panel at the Hydrocephalus Association’s 13th National Conference on Hydrocephalus, July 9-11, 2014, in Portland, Oregon.
By Jennifer Bechard Johnson, Education Manager There is something for everyone at our 13th National Conference on Hydrocephalus. We are happy to announce that this year’s conference will have a special track of programming dedicated to meeting the needs of the normal pressure hydrocephalus (NPH) population. Here is a preview of what our conference has to […]
Congratulations 2013-2014 Brian Christopher Newcomer Reaching for Racquets Tennis Scholarship Recipients!
The Hydrocephalus Association is so pleased to announce the 2013-2014 Brian Christopher Newcomer Reaching for Racquets Tennis Scholarship Recipients!
The Cibulas spent a decade building a house that their sons could grow up in and live in after their parents were gone. It features cutting-edge technology and does not aesthetically announce that anyone disabled lives there.
Haylea Blank shares the take-aways from attending two Hydrocephalus Association national conferences that have helped her manage her hydrocephalus into adulthood.
The Hydrocephalus Association is pleased to announce the Medical Chairs of the 13th National Conference on Hydrocephalus – Drs. Nathan Selden, Marion “Jack” Walker, and Michael A. Williams.
Can the touch of a hand to the head, an assessment tool thought to be time-honored and true for assessing pressure in the brain of an infant, also be consistent across physicians? Dr. John Wellons summarizes the findings of this recent study from the Hydrocephalus Clinical Research Network.
The Hydrocephalus Association’s First Annual Vision Dinner, “A Time for Awareness; The Hope for a Cure,” unites politicians, neurosurgeons, scientists, advocates, and business leaders to raise the public profile of hydrocephalus and to share the current research initiatives and successes around the condition.
It is not uncommon for children with hydrocephalus to undergo numerous CT scans throughout their life, raising the concern about the effects of the radiation exposure for the future. Edward Ahn, MD, and colleagues at Johns Hopkins Hospital suggest the use of limited-sequence head CT scans for children with hydrocephalus to limit the amount of radiation they receive during CT scans.
In our third installment of the Mentored Young Investigator (MYI) blog series, we showcase 2009 MYI recipient, Joon Shim, Ph.D. At the time of the award, Dr. Shim was a postdoctoral fellow at Boston Children’s Hospital. He is now a Research Assistant Professor at Indiana University. He received an MYI grant for his study, “The […]
Justin Timberlake, Taylor Swift, Alison Sweeney, Dr. Lauren Streicher, Kasey Kahne, and Dick Wagner are all helping raise the profile of hydrocephalus, a little known brain condition that affects 1 million Americans, from infants to seniors. The Hydrocephalus Association thinks this is a great way to kick off Hydrocephalus Awareness Month, September 2013.
Dr. Tamara Simon discusses her work as the Principal Investigator for the shunt infection registry for the Hydrocephalus Clinical Research Network. Her study aims to understand the risk factors associated with shunt infection and how shunt infections are being treated.
Matthew Schwerha, reporting for the Barrington Courier-Review, interviews one of our current Chicago WALK Chairs, Katie Cook, who’s son Conor has hydrocephalus. The Chicago WALK took place on August 18, 2013 at Soldier’s Field.
Matthew Schwerha, reporting for The Doings Weekly, interviews Susan Yousif, who’s 2 year-old son has hydrocephalus, at the Chicago WALK, which took place on August 18, 2013 at Soldier’s Field.
The Hydrocephalus Association (HA) has selected Timothy Vogel, M.D., from Cincinnati Children’s Hospital Medical Center, to receive funding for an additional research grant in HA’s 2013 grant cycle, for his work in basic science that improve our understanding of the root causes of hydrocephalus.
If you’re new to buying healthcare, finding the perfect plan can be like trying to find the Wizard without having a yellow brick road to guide you to the Emerald City, especially when you’re living with a pre-existing condition like hydrocephalus.
Cortney Pellettieri of Los Angeles, CA, is selected as one of 5 women committed to a cause and making a difference. She is the co-chair for the Los Angeles Hydrocephalus WALK, which will raise funds and awareness for a condition that affects 1 million Americans and is the leading cause for brain surgery in children.
Andrew Smith, 14, who has spina bifida and hydrocephalus, and his mom Donna welcome a 2 year old Labrador retriever/golden retriever mix into their home and family, reports TuscaloosaNews.com.
Tucson News Now reports that Jacob Mockbee received 4,600 birthday wishes from around the world after his father and fellow police officers in Tucson, Arizona, raised a Facebook challenge to have 1,600 cards sent to Jacob for his 16th birthday. Jacob lives with spina bifida and hydrocephalus.
The International Federation for Spina Bifida and Hydrocephalus (IF) and the China Disabled Persons’ Federation (CDPF) held a seminar on the care for children and adults with Spina Bifida and Hydrocephalus at the China Rehabilitation Research Center (CRRC) in Beijing. The CRRC will create a center for treatment within their hospital and is a first step toward creating a network in China.
Dillon Wades was born with cerebral palsy, epilepsy, and hydrocephalus, for which he has 2 shunts. ABC 7 affiliate ConnectAmarillo.com highlight the Wades family and their sons, Dillon and Connor, as examples of the Panhandle Spirit.
Progress-index.com reports on ten-year-old Casey Wray of Colonial Heights, VA, who was given an all expense paid trip to to New Jersey to see WWE’s WrestleMania by the Make-A-Wish Foundation. Casey has hydrocephalus and, on the trip with his family, met other families from all over the world, including another little boy from Kansas with hydrocephalus.
New Vision, a Ugandan newspaper, reports that health estimates show over 2,500 new cases of hydrocephalus are reported each year. Since treatment can be cost prohibitive, Johnson Derek, the Executive Director for CURE hospital in Mbale, states that they have developed a way to assess families ability to pay and are providing children much needed medical help.
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.
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.