EDUCATION & SUPPORT
New Ask the Expert Educational Series Launched
In 2019 we launched two new Ask the Expert video series to help people impacted by hydrocephalus manage the everyday challenges of living with the condition. The first series was focused on adults living with hydrocephalus, while the other was specifically for older Americans diagnosed with Normal Pressure Hydrocephalus (NPH). In each series, Dr. Abhay Moghekar, neurologist and Research Director of the Cerebrospinal Fluid Center at Johns Hopkins Medicine; and Dr. Mark Luciano, neurosurgeon and Director of the Cerebrospinal Fluid Center at Johns Hopkins Medicine, joined Amanda Garzon, HA’s National Director of Program Services and Communications, and Jennifer Bechard, HA’s Education Manager, to tackle some of the most common questions the Hydrocephalus Association receives to its support line and on social media.
Are patients with hydrocephalus predisposed to having more headaches? What is the proper way to diagnose someone with NPH? Is it safe for women with hydrocephalus to get pregnant? These are just a few of the questions addressed in the video series. Other topics include the steps NPH patients should take after diagnosis, what happens when NPH is untreated, Slit Ventricles vs. Slit Ventricle Syndrome, Transitioning to Adult Healthcare, among others.
Our Ask the Experts Series for Adults Living with Hydrocephalus and our Ask the Experts Series About Normal Pressure Hydrocephalus are both available on HA’s YouTube channel.
Codman Specialty Surgical
Codman, a division of Integra LifeSciences Corporation, has been a long standing supporter of the Hydrocephalus Association. In 2019, they sponsored our Ask the Expert video series, which featured medical experts discussing important topics for people living with hydrocephalus.
Vice President, Global Marketing,
Codman Specialty Surgical,
a division of Integra LifeSciences Corporation.
“We are proud to be a partner of the Hydrocephalus Association, supporting their critical and educational programs for nearly 20 years, including their educational resources and their biannual National Conference on Hydrocephalus. Integra is invested in bringing greater certainty to the management of Hydrocephalus for clinicians, patients and their caregivers, and our partnership with the Hydrocephalus Association is an integral and important part of this journey together to improve patient care."
Academic Scholarships Awarded to 12 Young People
The Hydrocephalus Association awarded academic scholarships to 12 bright young people living with hydrocephalus through our 2019 Scholarship Award Program. HA’s scholarship program was established in 1994 to provide financial assistance to capable and promising teens, young adults and adults who live with the ongoing challenges and complexities of hydrocephalus. Since the scholarship program was established, HA has awarded 203 scholarships to 203 deserving future leaders of our community. We are proud to honor these remarkable young adults. In addition to successfully managing their hydrocephalus, these students continue to excel in the classroom, volunteer and give back to help their local communities. They are an inspiration to us all, demonstrating that hydrocephalus does not stand in the way of pursuing one’s goals.
These twelve scholarships are funded by the: Gerard Swartz Fudge Memorial Scholarship Fund, Morris L. and Rebecca Ziskind Memorial Scholarship Fund, Anthony Abbene Scholarship Fund, Justin Scot Alston Memorial Scholarship Fund, Mario J. Tocco Hydrocephalus Foundation Scholarship Fund, Baldus Family Scholarship in Memory Gerard Swartz Fudge Scholarship, Kate Finlayson Memorial Scholarship, and the Hydrocephalus Association Scholarship, which is provided by Erik and Lisa Chamberlain.
Our gratitude is extended to all the funders for their generosity and the Scholarship Committee for all their support and dedication.
Educating Families in New Jersey About Hydrocephalus
On Nov. 9, the Hydrocephalus Association participated in an Education Day in partnership with Hackensack Meridian Health at Jersey Shore University Medical Center in Neptune, NJ. The event, “Living with Hydrocephalus: Symptoms, Treatments & Beyond,” included presentations by doctors, clinicians and patients who are living with hydrocephalus.
Carly Weisman, who acquired hydrocephalus as a baby, shared her story of living with this condition in the morning workshop focused on pediatric hydrocephalus. She has endured 12 brain surgeries due to her hydrocephalus and volunteers with HA as our New Jersey Community Network leader and Co-Chair of our Jersey Shore WALK to End Hydrocephalus. Trish Bogucki, who was diagnosed with Normal Pressure Hydrocephalus (NPH) in 2015, spoke in the afternoon workshop focused on adult hydrocephalus and NPH. She shared her story in the hopes helping other older Americans who may be living with debilitating symptoms, when they could actually be enjoying their retirement.
Dr. Lawrence Daniels, a neurosurgeon from Jersey Shore University Medical Center, was one of the medical experts who participated. He explained what hydrocephalus is, common symptoms and treatment options. He was joined by colleagues who covered fetal diagnosis of hydrocephalus, outcomes for infants with infant hydrocephalus, adult forms of hydrocephalus, and the challenges of diagnosis and new treatment trends for NPH. The Hydrocephalus Association was grateful for the opportunity to support Hackensack Meridian Jersey Shore Hospital and Dr. Daniels in this event bringing together our hydrocephalus community in New Jersey.