The Kids Wish Network granted 4 year-old Jace Carmack his wish for him and his family to visit Disneyland and Universal Studios. Jace was born with hydrocephalus and has endured numerous brain surgeries to revise his shunt.
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.
Matt Kocsis will be joined by family, friends, and his life-long neighbor, Brian Osborne, a Season 10 The Bachelorette contestant, as he WALKs for a cure at the 2014 Central PA Hydrocephalus Association WALK in Hershey, PA. Matt, a senior in high school, has undergone 93 brain surgeries to treat his hydrocephalus.
WRCB Channel 3 out of Chattanooga covers the newly-crowned Miss Tennessee’s Chattanooga visit where Shelby Thompson spent time with little Ema McLaughen, the 5 year old girl who stole the hearts of the pageant contestants and attendees during the 2014 competition.
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) in partnership with Boston Children’s and the International Federation for Spina Bifida and Hydrocephalus (IF) co-hosted the Spina Bifida and Hydrocephalus Partner Engagement Meeting April 22, 2014. The meeting marked the first ever discussion among the 21 organizations in attendance to advance spina bifida and hydrocephalus prevention and care. The Hydrocephalus Association was in attendance.
The Chattanoogan.com features Ema McLaughen’s visit to the Miss Tennessee Pageant preliminary round as the special guest of Miss Metropolitan Darby Schumacher, a pageant contestant. The Chattanooga WALK is also featured in the piece, which will take place on October 25, 2014, at Coolidge Park in Chattanooga.
The Courier-Post shares the accomplishment of 17-year-old Michaela Healy who graduated from high school with her peers, despite having over 200 surgeries to treat her hydrocephalus. Click here to read the article.
WTVC NewsChannel 9 features Ema McLaughen’s backstage experience at the Miss Tennessee Scholarship Pageant and her heartwarming meeting with the 2013 Miss Tennessee, Shelby Claire Thompson, and pageant contestant Darby Schumacher.
Shelby Thompson, Miss Tennessee 2013, and Darby Schumacher, Miss Metropolitian 2014 and competing for the Miss Tennessee crown, take time out from the pageant to make one little girl with hydrocephalus feel like a princess.
WBBJ 7 Eyewitness news features Ema, daughter of Chara McLaughen, our 2014 Greater Chattanooga Hydrocephalus Association WALK Chair, as she spends a special evening with the contestants of the Miss Tennessee Scholarship Pageant after 3 recent surgeries for her hydrocephalus.
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 excited to announce our new video blog series, “Through a Mother’s Eyes: The Journey with Hydrocephalus.” Join Debby Buffa each month as she answers a new question from our community.
Dr. Tamara Simon and her research team out of Seattle Children’s Hospital have uncovered a host of pathogens never before associated with shunt infections in the CSF of eight children, which could lead to new understandings on treating and preventing shunt infections.
As the Hydrocephalus Association wraps up its interview series commemorating our 30th anniversary, we sit down with Russell Fudge, a founding member of the association and its longest serving board member. Russell closes our interview series looking back at our rich history and giving the association a message for the future.
As the Hydrocephalus Association continues it’s 30th anniversary commemoration, Elijah Lawrence shares his college essay, a reflection the values and gifts he lives every day of his life. Elijah is a Teens Take Charge Advisory Council member and an active member of the hydrocephalus community.
Tamara Williams of Battle Creek, Michigan, returned to school after 5 months in and out of hospitals recovering from a shunt revision for hydrocephalus.
Jennifer Bechard Johnson, the Hydrocephalus Association’s Teens Take Charge mentor and Education and Support Manager, shares her views on growing up with hydrocephalus and mentoring the future voice of hydrocephalus through her work with the teen and young adult community.
In a study published in the journal Brain, researchers find that the infusion of a naturally occurring protein can prevent the development of hydrocephalus after an intraventricular hemorrhage. The results show great promise in the work to develop a preventive therapy for the development of hydrocephalus, particularly in one of our most fragile populations, premature infants.
As the Hydrocephalus Association continues it’s 30th anniversary commemoration, David Browdy, Board Member and Chair of the Research Committee, reminisces about the history of the association and shares a vision for the future.
October is Spina Bifida Awareness Month. Nicole Small reflects on living with both spina bifida and hydrocephalus since birth, as the Hydrocephalus Association continues our interview series commemorating our 30th anniversary.
As the Hydrocephalus Association continues its history series commemorating our 30th anniversary, Barrett O’Connor, chair of the HA board of directors, shares a personal message to the hydrocephalus community.
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 NapervilleSun, interviews Amber Hiland, who’s son Carter passed away from complications of hydrocephalus, at the Hydrocephalus Association Chicago WALK, which took place on August 18, 2013 at Soldier’s Field.
Matthew Schwerha, reporting for The Norridge-Harwood Heights News, interviews Vanessa Valentin, who’s 12 year-old son Enrique has hydrocephalus, at the Chicago WALK, which took place on August 18, 2013 at Soldier’s Field.
Woodlands Online features the upcoming Hydrocephalus Association Houston WALK. This in-depth piece highlights two personal stories and raises awareness to the need to raise funds for research into better treatment options and, ultimately, a cure for hydrocephalus. Join the Houston WALK on September 21, 2013.
Roxana Ramos became a Hydrocephalus Association Support Group leader to connect her brother to others that have hydrocephalus, only to realize family members benefit, as well. As we continue our interview series commemorating our 30th anniversary, we sit down with Roxana to talk about her motivation behind her volunteer position and the value her service brings to the hydrocephalus community.
Debby Buffa has raised two daughters with hydrocephalus and provided support to hundreds of families since the early 1980s. As the Hydrocephalus Association (HA) continues its 30th anniversary interview series, Debby shares her journey with HA over the last 30 years.
As we continue our interview series in commemoration of the Hydrocephalus Association’s 30th anniversary, we sit down with Phyllis Rogers, who is in her 10th year chairing the Denver WALK, as she reflects on her drive to continue to chair the WALK and her hopes for the future of the Hydrocephalus Association.
Thrasher Research Fund Study Evaluates New Eye Movement Tracking Method For Detection of Hydrocephalus
The Thrasher Research Fund is conducting a study that tests a new method of eye movement tracking technology to determine if it can assess the function of the nerves impacted by hydrocephalus that are responsible for vision and movement of the eye. The study is based in NYC and is actively seeking participants.
Elizabeth Holthouse, a high school senior, shares her video documentary about her journey with hydrocephalus, called “Normal on the Outside.” The Hydrocephalus Association talks with Liz about her experience making the video and the message she wants to send to the world.
Tina Daniels, Hydrocephalus Association Support Group leader in Owasso, OK, shares her experiences living with hydrocephalus and her decision to lead a support group.
Rachel Katz, diagnosed with hydrocephalus at the age of 12, shares the transformational gift she received after her last shunt revision. Read her blog, “Brushes with Mortality: 5 Lessons On Dealing with Hard Times.” Be inspired.
The Whitinsville Christian girls basketball team in Whitinsville, Massachusetts, decided to use their school’s “Senior Night” to share the story of their teammate, to raise awareness to some of the challenges of living with hydrocephalus, and to raise money to fund hydrocephalus research.
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.
Jennifer Bechard sits down with Jamie Wright, our Support Group Leader in Houston, TX, as we continue our history series commemorating our 30th anniversary. Jamie was born six weeks prematurely, diagnosed with post-hemorrhagic hydrocephalus, and was shunted at 20 months old. She is now in her second year of medical school at the University of Texas Medical School at Houston, where she is in a combined MD/PhD program.
Our Teens Take Charge (TTC) program provides support, training, awareness and fundraising opportunities so that teens can be an effective force in making their stories heard. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with Haylea Lynn Blank, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association.
As we look back and commemorate 30 years of supporting, educating, connecting and informing families, we ask where we would be without our volunteers. Our volunteer leaders across the country have helped weave the rich tapestry of our HA history. This week we sit down with our Virginia Support Group Leader, Annie Mason.
The San Jose Mercury News shares the story of Everett Zamarron-Smith who developed hydrocephalus as the result of a skateboarding accident that left him with a traumatic brain injury.