Preliminary Program
To access the full conference program and speakers, visit our event on Zoom.
Conference agenda, sessions, speakers and times are tentative and subject to change.
Opening Session
All Ages
3:00–3:15PM Eastern Time
Conference Welcome
- Speakers:Diana Gray, MAJason PrestonJoin Diana Gray, HA President, and CEO, and Jason Preston, Chair of the HA Board of Co-founder of Dent, as we open our 2023 National Conference on Hydrocephalus, HA CONNECT.
General Session
All Ages
3:30–4:30PM Eastern Time
ETV and ETV/CPC
- Speakers:Abhaya Kulkarni, MD, PhD, FRCSCBen Warf, MDEndoscopic Third Ventriculostomy (ETV) is a surgical treatment that opens a natural passageway for fluid to leave the ventricles without the use of a shunt. An ETV with CPC is when a neurosurgeon uses a device to burn or cauterize choroid plexus tissue to reduce the amount of fluid being introduced into the ventricles. Who is a candidate for ETV and ETV/CPC and what are the success rates? How did ETV become a common practice for treating certain types of hydrocephalus? Audience participants will learn about the early adoption of CPC from the neurosurgeon who pioneered the technique to its current use. There will be a discussion on criteria for patient selection for both procedures, benefits, and possible risks and complications. There will be ample time for Q&A at the end of the presentation. Come ready with your questions for our experts!
Concurrent Sessions
Parents
4:45–6:00PM Eastern Time
IEP Strategies and Dealing with the School System
- Speakers: Ashley VanCleef, Esq T. Andrew Zabel, PhD, ABPPStudents with hydrocephalus may experience learning disabilities that can be mild to severe. Advocating for our children in school can feel like a battle as hydrocephalus is not well understood and the academic, social, and emotional needs of each individual child can be so different. Join Ashley VanCleef and Dr. Andrew Zabel as they share insights into learning and hydrocephalus as well as strategies for how to be an effective advocate with your child's educational team. This presentation will review learning issues often experienced by students with hydrocephalus, and will provide an overview of IEPs/504 plans, your child's rights, practical advice, and the best path to escalate issues that aren't being resolved at the school-level.
AdultsYoung Adults
4:45–6:00PM Eastern Time
How to Manage Hydrocephalus in the Workplace
- Stay tuned for more information about our speakers and session on employment and hydrocephalus.
NPH
4:45–6:00PM Eastern Time
The NPH Road to Recovery
- Speaker:Nickolas Dasher, PhD, ABPPThe surgical treatment of NPH can mitigate the triad of symptoms associated with the condition, namely unsteady gait, incontinence, and cognitive decline. For some patients, however, it may take longer than expected to fully return to their previous level of function, and in many cases, these symptoms may not fully go away. This leaves patients and loved ones to wonder if they will ever get “better.” Join Dr. Nickolas Dasher, a neuropsychologist, to explore therapies and practices to optimize your post-operative care.
TeensYoung Adults
4:45–6:00PM Eastern Time
Going to College
- Speaker: Annie Tulkin, MSApplying for and choosing a college is an exciting time for a young adult. Deciding on that perfect college can be a combination of size, academic programs, social life as well as closeness to a medical facility, and the ability to have academic supports if you need them. Success in college is knowing how to ask for what you need - which isn't always easy! Join Annie Tulkin, a disability and college transition specialist, to learn more about navigating the transition to college.
All Ages
4:45–6:00PM Eastern Time
Mental Health and Hydrocephalus
- Speaker:Katie McClure, LMSW, MAPPHydrocephalus is an invisible condition. How often do we hear, "I never knew anything was wrong with you?" What we show on the outside may hide what we feel on the inside. Common feelings expressed by individuals include feeling like we're hiding something, struggling with Imposter syndrome, covering up headaches or other pain we may be experiencing, and feeling broken or different. The emerging field of positive psychology might have the answers to flipping the script and dealing with the hidden feelings that have the potential to cause issues in ourselves and in our personal and professional relationships.
General Sessions
All Ages
6:15–7:15PM Eastern Time
Testing a Potential Treatment for Reducing Abnormal Brain Fluid Accumulation
- Speaker: Young-Kwon Hong, PhDDr. Hong will share his expertise in lymphatic development and how this relates to abnormal fluid accumulation in the brain in conditions such as hydrocephalus. His work also focuses on a potential drug treatment that is currently undergoing preclinical testing.
All Ages
7:30–8:30PM Eastern Time
My Shunt is Failing: What Happens Next?
- Speakers:Lauren Barbieri, CRNPJennifer Marshall, MSPAS, MSJ, PA-CYou feel as if your shunt is failing - it's time to go to the hospital. A number of tests can be used to evaluate whether or not your shunt is working including an MRI, shunt series, shunt tap, flow study, intracranial pressure monitor, among others and, of course, an evaluation of your symptoms with your doctor. Understanding these tests and why they are being performed can ease anxiety and let you be an informed and active part of the evaluation process.
Closing Session
All Ages
8:30PM Eastern Time
Closing Ceremonies
- Speakers:Ramin Eskandari, MDDiana Gray, MAMarion L. (Jack) Walker, MDMichael A. Williams, MD