By Paul Gross, Hydrocephalus Clinical Research Network (HCRN) blog
The HCRN investigators and coordinators convened for the fall meeting Nov 7- 8 in Salt Lake City. It was the biggest meeting yet with 35 participants, as our Vancouver and Nashville centers have completed their trial periods. Dr. John Kestle reviewed the acceleration in HCRN productivity, as demonstrated by numerous publications anticipated by the end of the year. Exciting updates from all the investigators revealed steady progress on patient accrual in the Registry, the CSF Biomarker study and Ventricular Involvement in Neuropsychological Outcomes in pediatric Hydrocephalus (VINOH). Preliminary analysis of Shunting Outcomes for Post Hemorrhagic Hydrocephalus (SOPHH) data and Infection Prevention data were presented. New study proposals were discussed in the areas of Endoscopic Third Ventriculostomy combined with Choroid Plexus Cauterization (ETV/CPC) to validate the work of Harvard’s Dr. Benjamin Warf, infection prevention and shunt placement techniques. The coordinators worked on the new data management system (OpenClinica). Small group sessions were used to discuss and update network policies and procedures. It was a very full day two days. The next meeting will be in Nashville in May 2014.
This is college application time for the high school seniors in our community who are applying to college. The pains of completing the paperwork and writing the essays can be felt throughout the entire family, as many parents will attest! For seniors writing their essays, it is also a time of self-reflection. They dig down deep to find the perfect words and sentiments that will truly reflect who they are, transforming lines on a page to a living, breathing human being. Elijah Lawrence is a member of our Teens Take Charge (TTC) Advisory Council, has been a summer intern in our HA office, and his family has had a close connection to HA for many many years. As we continue our 30th anniversary commemoration, Elijah gave us permission to share his college essay. As he reflects back on his life, he also reflects back on the values his parents have instilled in him, as well as the values, information and self-advocacy tools that TTC and HA strive deliver to our community and, particularly, our young adults. Pull out the hankie…or at least be ready to clap loudly. Read more
SAVE THE DATE: The 13th National Conference on Hydrocephalus will take place in Portland, OR, on July 9-11, 2014!
The goal of our conferences is to provide tools and connections to address the medical, educational and social complexities of living with hydrocephalus and to provide the opportunity for an enjoyable get together!
There will also be plenty of interactive sessions, the cornerstone educational seminars by our team of medical professionals and researchers with time for Q&A, the ever popular hands-on brain anatomy and physiology lab, and the dinner and dance with talent show. Read more
On November 14, 2013, Seattle Seahawks owner and Microsoft co-founder Paul Allen announced that he will fund a two-year, $2.4 million study looking into the long-term implications of damage to the brain caused by a traumatic brain injury (TBI), such as a blow(s) to the head. The Seattle-based project will bring together scientists from the University of Washington (UW) and the Allen Institute for Brain Science. A principal investigator on the UW team is Dr. Richard Ellenbogen, a University of Washington neurosurgeon and a member of the Hydrocephalus Association Medical Advisory Board. Dr. Ellenbogen volunteers as a neurological specialist to the NFL. Read more
Many members of our community have come to know Jennifer Bechard Johnson, the Hydrocephalus Association’s (HA) Education and Support Manager and our Teens Take Charge (TTC) mentor. She has spent countless hours on the phone offering support, information, caring, and a first-hand perspective on growing up and living with hydrocephalus. She has endured 100 brain surgeries to revise her shunt since her diagnosis at 10 and first shunt placement at 11. Her complicated case of hydrocephalus has not deterred her from being a source of inspiration for the teens and young adults in our community, as she helps them become self-advocates for their condition with medical professionals, educational professionals, government representatives, and the general public. Jenn recently Read more
What comes after Black Friday and Cyber Monday? #GivingTuesday! #GivingTuesday is a special call to action and creates a national day of giving around the annual shopping and spending season.
Seeing an opportunity to channel the generous spirit of the holiday season to inspire action around charitable giving, a group of friends and partners, led by the 92nd Street Y, came together to find ways to promote and celebrate the great American tradition of giving. The founding partners are thought leaders in philanthropy, social media and grassroots organizing, including the United Nations Foundation, DonorsChoose.org, Mashable, Blackbaud, Read more
As a father of a child with hydrocephalus, I’m committed to bringing much needed attention to our cause and finding new ways to treat this condition. Much like John Holter, the great toolmaker who developed the first commercially-viable shunt for his son, I’m willing to give all I have to see a medical breakthrough for William during my lifetime.
Since the mid-50s, we’ve seen amazing breakthroughs in nearly all areas of medicine: new vaccines and drugs … organ transplants … imaging technology … artificial joints … in vitro fertilization … the list goes on. Unfortunately, hydrocephalus has been mostly left behind. Read more
When individuals or parents receive the diagnosis of hydrocephalus, they immediately turn to finding information about the condition, how it is treated, and how it will impact their lives. When Tammy Knight’s son was born 29 years ago, she found herself in need of information. Her desire to educate herself and then to help others, led her to become the support group leader for our Colorado Community Support Network. She now lives in Salt Lake City, where she started and leads our Utah Community Support Network. As we continue our interview series commemorating our 30th anniversary, Tammy sits down with Jennifer (Bechard) Johnson, our Education Manager, to reflect back on her years of service to the hydrocephalus community and the value of trusted information, like that produced by the Hydrocephalus Association, that supports individuals and families on their journey. Read more
The story of Congresswoman Gabrielle (“Gabby”) Giffords’ brave recuperation from her very public brush with death on January 8, 2011, is well known to most Americans. She was seriously wounded at a public “Congress on Your Corner” event in Tucson, Arizona.
What is less well known is that a few months after the shooting, Gabby was diagnosed with hydrocephalus as a result of her brain trauma, and received a ventriculoperitoneal (VP) shunt. Today, she continues to work hard at her recuperation while staying deeply engaged in the public forum as a book author and respected public policy expert on a variety of important subjects. Read more
Dr. John Wellons, III, MD, MSPH, Chief of Pediatric Neurosurgery at Monroe Carrel Jr. Children’s Hospital at Vanderbilt writes about the study, “The assessment of bulging fontanel and splitting of sutures in premature infants: an interrater reliability study by the HCRN,” published in the Journal of Neurosurgery Pediatrics, and the meaning of the findings.
For many years, pediatric neurosurgeons have made decisions on the treatment of infants with hydrocephalus by the touch of a hand to the head, a gentle maneuver that implies care and reinforces the importance of touch in the physician-patient relationship. Yet in that simple touch of the soft spot of the head, Read more