Hydrocephalus Community Unites at the 2024 National Conference on Hydrocephalus

August 13, 2024

The Hydrocephalus Association’s (HA) 18th National Conference on Hydrocephalus, HA CONNECT, took place from July 25-27 in Tampa, FL. Hosted in collaboration with presenting sponsors Tampa General Hospital and USF Health, the event attracted nearly 600 attendees, including patients, caregivers, medical professionals, scientists, medical device representatives, and other organizations.

The conference kicked off on Thursday afternoon with our New Participant Orientation, providing attendees with an opportunity to connect and learn how to maximize their conference experience from the start. Immediately following, Diana Gray, President and CEO of HA, and Jason Preston, Chair of the HA Board of Directors, took the stage to deliver a heartfelt welcome address.

As the day progressed, the energy ramped up with our ‘Making Connections – Person to Person’ sessions. Grouped by their connection to hydrocephalus—whether by age, age at diagnosis, or as a sibling, spouse, or extended family member—conference attendees engaged in nearly two hours of heartfelt storytelling, connection, and mutual support. Tissues were a must, as the sessions underscored the incredible power of community. Participants bonded with others in similar situations, shared personal experiences, and gained invaluable insights, making this opportunity profoundly impactful. This was followed by a lively reception, offering attendees a chance to explore and chat with the sponsors and exhibitors, setting the stage for an unforgettable event.

With over 80 educational and plenary sessions, the hydrocephalus conference covered a wide range of topics. Some session highlights included:

Researchers shared updates on the PENS Clinical Trial during the Normal Pressure Hydrocephalus (NPH) Townhall, exploring the effectiveness of shunting in idiopathic Normal Pressure Hydrocephalus.
Dr. Lauren Jantzie from Johns Hopkins University presented an exciting clinical trial testing a new treatment a novel drug combination to prevent hydrocephalus after a brain bleed in premature babies. She and Dr. Shenandoah Robinson are both leading this important study.
Dr. Harrison Bai from Johns Hopkins University and Dr. Andrew Kobets from Albert Einstein College of Medicine discussed how AI can enhance diagnostic accuracy for hydrocephalus, particularly in differentiating it from conditions like Alzheimer’s and Parkinson’s.
Dr. Young-Kwon Hong from Keck School of Medicine of USC has unveiled a potential treatment for hydrocephalus that may also delay the onset of Alzheimer’s and Parkinson’s disease.

Throughout the three-day conference, participants delved into the excitement of our interactive exhibit hall, where they could touch a shunt, perform an endoscopic third ventriculostomy (ETV), and measure CSF flow. Sponsors and exhibitors showcased their latest products and technologies, offering attendees a chance to ask questions and learn more about advancements in the field.

For the first time ever, a clinical study was conducted at the conference. Rhaeos, a clinical-stage medical device company spun out of Northwestern University, sponsored IRB-approved studies on non-invasive, wireless monitoring of CSF shunts. The trial focused on the effectiveness of FlowSense, a noninvasive wearable skin sensor for the hydrocephalus community. Our community members were thrilled to participate and felt empowered by contributing valuable data that could one day simplify hydrocephalus management.

Always a conference favorite, our Kids Camp offered fun, hands-on activities while fostering lifelong friendships. Highlights included a Brain Lab, where children performed brain surgery on skull and brain models, practicing the intricate process of implanting a shunt. Many doctors enjoyed sharing their expertise with the younger members of the community and mentioned that this was one of their conference highlights.

One of the most cherished aspects of HA CONNECT was the chance to form deep, meaningful connections. Whether among patients, families, doctors, or researchers, these relationships provided invaluable support and camaraderie, creating a strong sense of community and belonging.

The grand finale of HA CONNECT is one of the most anticipated events of the conference: The Family Dinner Dance and Talent Show. This special evening brings together community members, families, doctors, researchers, and sponsors to celebrate and support one another. The talent show is a cherished moment, offering attendees a safe and supportive platform to showcase their talents. This heartwarming event leaves lasting memories and underscores the profound sense of community that HA CONNECT fosters.

HA CONNECT, the 18th National Conference on Hydrocephalus in 2024 was a resounding success, offering education, connection, and inspiration to all who attended. The Hydrocephalus Association extends heartfelt thanks to everyone who participated and looks forward to continuing the journey towards improving the lives of those affected by hydrocephalus.