hydrocephalus
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.
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.
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.
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.
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.
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.
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.
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.
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.”
Good Samaritan Restores Faith in Bike Ride for Hydrocephalus
From the Celsius Blog: Just when our cyclists hit their lowest point on the Spirit of America bike ride for hydrocephalus, a Good Samaritan comes to their rescue.
San Diego Ad Campaign Features Children with Special Needs
San Diego-based toy company Infantino is creating an ad campaign, called “Everybody Plays,” featuring children with special needs. The children in the campaign have special needs including Down syndrome, Hydrocephalus, visual impairments and congenital heart defects.
Young Pakistani Girl Develops Hydrocephalus After Gunshot Wound to the Head
Time Magazine WORLD edition reports on Malala Yousafzai, a 14-year-old Pakistani girl, was shot in the head by Taliban gunman after championing the rights of girls to receive an education. She has been flown to Birmingham, England, for medical care.
Friends Join Dave Mathis in the DesMoines Marathon
Dave Mathis, who has Noonan syndrome and hydrocephalus, was surrounded by friends as they competed in the Des Moines Marathon.
The Hanford Sentinel Shares the Story of the Zepeda Family
The Hanford Sentinel, out of Hanford, California, a small town in California’s Central Valley, shares the story of the Zepeda’s and their twin daughters, Brenda and Dani, born prematurely and diagnosed with hydrocephalus. They participated in the Fresno WALK for Hydrocephalus on October 14th.
Mom Shares Inspirational Words on Cincinnati Children’s Blog
Heather King, a writer and blogger, shares a mother’s perspective on raising a child with hydrocephalus.
Duke Medical Schools Receives FDA Approval for Stem Cell Product
Duke University School of Medicine receives FDA approval of a stem cell product, called DUCORD, for patients with disorders affecting the body’s blood production system. They are currently conducting research into using cord blood stem cells to help heal a brain damaged by hydrocephalus under Dr. Joanne Kurtzberg, chief of the Division of Pediatric Blood and Marrow Transplantation at Duke.
Mark and Mary’s Cross-Country Bike Ride Featured on San Antonio News Station
Mark Paulissen and Mary Sodano’s 2,500 bike ride, Spirit of America Ride for Hydrocephalus, is featured on the San Antonio news outlet, KSAT.com.
Dr. Benjamin Warf Named a 2012 MacArthur Fellow and Awarded $500,000 Genius Grant
Dr. Benjamin Warf and four other Boston colleagues have been named 2012 MacArthur Fellows and awarded $500,000 “genius grants” by the MacArthur Foundation.
Tennessee Mom Calls for Research Funding of Hydrocephalus
Chara McLaughen raises awareness and calls for increased funding for research into hydrocephalus.
Tracy Taback’s Journey with Hydrocephalus Highlighted by Newington Life
Tracy Taback shares her story about being diagnosed with hydrocephalus. Since her ETV, she has become a Support Group Leader in Connecticut and an avid spokesperson to raise awareness of hydrocephalus.
Mark and Mary Break from Biking to Join the Houston WALK
Mark Paulissen and Mary Sodano take a break from their cross-country “Spirit of America Ride for Hydrocephalus” bike ride to join the inaugural Houston Hydrocephalus WALK.
Panama City Neurologist Calls Hydrocephalus an Epidemic
Dr. Sean Orr of Bay Medical Center in Panama City, Florida, sees hydrocephalus as an epidemic in Florida. A large retiree population is a key factor.
Northwest Herald Reports on Mom-to-be’s Journey of a Hydrocephalus Diagnosis for her Unborn Child
Katie Cook of Crystal Lake recounts her story of her child being diagnosed in utero with hydrocephalus.
Free Pediatric Hydrocephalus Clinic Opens in Liberia
The John F. Kennedy Medical Center launched a free Hydrocephalus treatment center in Liberia, a country in West Africa. Three successful surgeries have been performed.
Little Rock Kids Festival Raises Awareness
Volunteers organize the Little Rock Kids Festival to raise awareness in Arkansas.
Voices from Our Community: David Walters Shares his Hydrocephalus Story
David Walters was diagnosed with hydrocephalus at 2 weeks old and has had one shunt revision. He is an active teenager and member of the Hydrocephalus Association Teens Take Charge program. Read his story.
NY State Senator John Flanagan Proclaims September Hydrocephalus Awareness Month
NY State Senator John Flanagan proclaims September Hydrocephalus Awareness Month. Joined by Mia Padron, Senator Flanagan presented the Hydrocephalus Association with a resolution he sponsored to help raise awareness of the hydrocephalus.
Ryan Riley of Paducah, Kentucky Will Appear on the 56th Annual Telethon of the Stars
Ryan Riley has been chosen as an adult representative for the 56th Annual Lions Club/WPSD Local 6 Telethon of Stars on November 10th in Paducah, Kentucky. Ryan has had hydrocephalus since birth and has been involved with the Easter Seals since he was a baby.
Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus
Joyce Schwartz shares her 23 year journey of searching for a diagnosis and then treatment for Normal Pressure Hydrocephalus (HA).
9/15 – Richmond, Virginia Hydrocephalus Support Group Meeting
~Partners Network ~ Hydrocephalus Support Group Meeting Virginia TOPIC: Overview of 12th HA Conference When: Saturday, September 15, 2012 2:30pm to 4:00pm Where: Rappahannock Regional Library England Run branch 806 Lyons Blvd Fredericksburg, VA 22406 Please R.S.V.P. to Annie Mason by Wednesday March 21, 2012 (540) 898-4568 or Richmondsupport@hydroassoc.biz Find our group on Facebook under […]
Raising Awareness…From Coast to Coast!
Strength. Perseverance. Endurance. Spirit. Do these traits sound familiar? Of course, these are all words that describe individuals touched by hydrocephalus. These words also describe Mark Paulissen and Mary Sodano. Their spirit of adventure and love for bicycling has spurred them onto a journey of a lifetime. Sponsored by Celsius drink company, Mark and Mary have challenged […]
Voices from our Community: Madeleine Speaks Up About Hydrocephalus
By: Madeleine Daraowiche Hi, my name is Madeleine. I am 17 years old and will be a junior in high school. I have had hydrocephalus since before I was born. I was diagnosed in utero, and had my first shunt placed when I was 15 days old. Since then, I have had six shunt revisions. […]
Tracy Taback has Article about Hydrocephalus Published in The Hartford Courant
Tracy Taback raises awareness about hydrocephalus, shares her personal journey, and announces the upcoming Middlebury, Connecticut WALK scheduled for October 6th. To read the full article, click here.
Fiona Wilcox Makes it Back to School for the First Day of the Year
The Brink/The Oregonian reports on the heartwarming story of Fiona Wilcox who returns from a surgery in time for the first day as a freshman at Jefferson High School. To read the full article, click here.
2500 Mile Bike Ride will Benefit the Hydrocephalus Association
Mark Paulissen and Mary Sodano are preparing to embark on a 2500 mile bike ride journey ride for a cause near to their hearts, hydrocephalus. To read the full article, click here.
Duke University Study on Stem Blood Cell Infusions to Benefit Infants with Congenital Hydrocphalus
Baby Tyler, born in Pittsburgh, PA, receives infusions comprised of stem cell blood from her umbilical cord and placenta as part of a study by Duke University blood and marrow transplant program. To read the full article, click here.
Voices from Our Community: Milton Newman Shares His Story of Normal Pressure Hydrocephalus
Fog is Lifted After 15 Years of Confusion and Misdiagnosis Milt Newman’s retirement was not living up to expectations due to a slow progression of seemingly inexplicable mental and physical decline. What no one knew was that Milt, then 73, was suffering from Normal Pressure Hydrocephalus (NPH), a treatable neurological disorder in which excess fluid […]