hydrocephalus

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.

October is National Bullying Prevention Month

“Bullying is unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance. The behavior is repeated, or has the potential to be repeated, over time. Both kids who are bullied and who bully others may have serious, lasting problems.” (stopbullying.gov) Bullying. We hold on to the 1950s image of the […]

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 […]

Back To School Time!

It’s that time of the year – back to school time! Most kids around the country will have returned to school this past Tuesday, September 4th, if they have not already. This can be an exciting yet stressful time for parents and kids alike. While kids may be worried about facing the academic rigors of […]

Delaware’s Hydrocephalus WALK Highlighted in the Smyrna-Clayton Sun-Times

The Smyrna-Clayton Sun-Times highlights the upcoming Delaware Hydrocephalus WALK which will take place on September 22, 2012 at Smyrna High School. To read the full article, click here.

A Novel Micropatterned Microvalve Developed for the Treatment of Hydrocephalus

Researchers at Arizona State University in collaboration with Phoenix Children’s Hospital have developed a novel microvalve with a passive and simple design/implantation that may result in lower failure rates. To read the full article, click here.

September is Hydrocephalus Awareness Month! Here’s What You Can Do…

by Jennifer Bechard, Support Group Liaison This September, for Hydrocephalus Awareness Month, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or to the larger networks of which we […]

CT News Channel WTNH Spotlights the Upcoming Middlebury WALK

Connecticut News Channel WTNH spotlights the upcoming Middlebury WALK that will take place on October 6, 2012 at Meadowview Park. To read the full article, click here.

Famous Gospel Singer and Wife Create Their Family Through Adoption and Devotion

The Adrian Daily Telegram shares the story of the national recognition Jerry Garcia and his wife Sarah have received by adopting children with medical conditions and special needs. To read the full article, click here.

Wall Street Journal Reports on 70 Year Old Indiana Man’s Misdiagnosis of NPH

The Wall Street Journal shares the story of 70-year-old Jasper “J.D.” Cain, misdiagnosed with Parkinson’s disease but ultimately receives diagnosis of NPH. To read the full article, click here.

The Unique Challenges of Adult Hydrocephalus

By Dawn Mancuso “The difference between children and adults is that they’re shorter – not dumber.” ― Mo Willems Normally, I would agree with Mr. Willems. We adults tend to underestimate the intelligence of the children around us, assuming that our life experiences make us somehow smarter.The Unique Challenges of Adult Hydrocephalus However, I’ve learned […]