IMPROVING LIVES
HA CONNECT 2024
Strengthening Community, Advancing Knowledge
The Hydrocephalus Association’s (HA) 18th National Conference on Hydrocephalus, HA CONNECT 2024, was held July 25–27 in Tampa, Florida. Proudly presented in collaboration with lead sponsors, Tampa General Hospital and USF Health, this landmark event brought together 560 attendees—including individuals living with hydrocephalus, caregivers, medical professionals, researchers, industry representatives, and partner organizations—for three days of education, empowerment, and connection. The program included over 75 sessions and more than 60 speakers, including, but not limited to, neurosurgeons, neurologists, neuropsychologists, psychologists, rehabilitation specialists, scientists, and members of the community.
The program is developed with the feedback from our community. Conference session favorites like our Making Connections, Ask the Expert, and the closing Intergenerational Panel moderated by Dr. Michael Williams were joined by innovative new sessions, including a hands-on session that allowed conference goers to learn the dynamics of cerebrospinal fluid flow through a model of the ventricular system. Some of this year’s conference highlights included:
Keynote Speaker: Dr. Myron Rolle
Former NFL player turned neurosurgeon, Dr. Rolle inspired the audience with his journey from the football field to the operating room. He shared lessons from his book, The 2% Way, emphasizing how small, steady steps can lead to remarkable success.
Scientific and Medical Updates
Presentations included updates on the PENS Clinical Trial for Normal Pressure Hydrocephalus, promising research in a clinical trial to prevent hydrocephalus in premature infants following a brain bleed by Dr. Lauren Jantzie, a deep dive into how artificial intelligence is improving diagnostic accuracy, and a preview of a potential treatment that may delay the onset of Alzheimer’s and Parkinson’s diseases.
Interactive Exhibit Hall
Attendees had hands-on opportunities to touch a shunt, perform a simulated endoscopic third ventriculostomy (ETV), and measure cerebrospinal fluid (CSF) flow—experiences that brought medical concepts to life.
Onsite Clinical Study
For the first time, a clinical trial was conducted at HA CONNECT. Sponsored by Rhaeos, a medical device company from Northwestern University, the study tested FlowSense, a wearable sensor that noninvasively monitors shunt function. Our community showed strong interest, with many participants excited to contribute directly to research that may shape the future of hydrocephalus care.
A Record-Breaking Kids Camp
One of our largest Kids Camps to date featured fun, hands-on learning experiences. In the popular Brain Lab, children practiced placing shunts using skull and brain models—an experience many physicians described as among the most meaningful of the conference.
HA CONNECT 2024 reaffirmed the power of coming together. The connections forged among patients, families, clinicians, and researchers are the heart of the Hydrocephalus Association’s mission. HA CONNECT 2024 was a resounding success—delivering education, fostering community, and igniting hope for the future. Thank you to our sponsors, speakers, volunteers, and attendees for making this incredible event possible.
2024 Hydrocephalus Association Scholarship Recipients
The Hydrocephalus Association is proud to recognize the 2024 recipients of the Hydrocephalus Association Scholarship Awards. Since the program’s inception, HA has awarded scholarships to 266 extraordinary students who are not only managing the challenges of hydrocephalus but also thriving academically and making meaningful contributions to their communities.
“Being part of GroupMe and the Young Adults in their 20s Facebook group has made me feel less alone in my journey. It’s amazing to be part of a community where everyone understands the ups and downs of living with this condition.” — Grace McCombs
These remarkable young adults are scholars, volunteers, advocates, and leaders. They exemplify resilience, determination, and hope, proving that hydrocephalus is no barrier to achieving one’s dreams. We are honored to support their journeys and celebrate their accomplishments as they continue to inspire others and shape a brighter future.
Ashlei McGhee
Recipient of the Morris L. and Rebecca Ziskind Memorial Scholarships
Ashlei is enrolled at the University of Central Florida, where she is pursuing a Master’s degree in Communication Sciences and Disorders.
Benjamin Bachmore
Recipient of the Baldus Family Scholarship in Memory of Gerard Swartz Fudge
Benjamin is enrolled at Virginia Tech, where he is working toward a Bachelor’s degree in neuroscience.
Brayden Locricchio
Recipient of the Gerard Swartz Fudge Memorial Scholarships
Brayden is attending the University of Wisconsin – Platteville where he is studying for a Bachelor’s degree in History.
DeAndre Oliver
Recipient of the Anthony Abbene Memorial Scholarships
DeAndre is enrolled at Pima Community College, where he is earning a degree in Nursing.
Grace McCombs
Recipient of the Hydrocephalus Association Fund Scholarship, Supported by Erik & Lisa Chamberlain
Grace is completing a Master’s degree in Dance Education at Rutgers Mason Gross School of the Arts.
Kayla Gray
Recipient of the Mario J. Tocco Hydrocephalus Foundation Scholarship
Kayla is pursuing a PhD in Nursing with a focus on healthcare innovation at Arizona State University.
Kyleigh Morgan
Recipient of the Jacobsen Family Scholarship
Kyleigh is attending St. Lawrence College – Kingston, where she is working on a Bachelor’s degree in Nursing.
Lily Adkins
Recipient of the Kate Finlayson Memorial Scholarship
Lily is enrolled at Dominican University, earning a degree in Special Education. Her goal is to become a special education teacher and adaptive sports coach.
Elizabeth “Lizzie” Armor
Recipient of the Anthony Abbene Memorial Scholarships
Lizzie is attending the University of Michigan, where she plans to study biomedical engineering.
Parker Shubin
Recipient of the Gerard Swartz Fudge Memorial Scholarships
Parker is enrolled at the University of California, Los Angeles, where he intends to build a career in neurosciences.
Tai Parsley
Recipient of the Justin Scot Alston Memorial Scholarship
Tai is a sophomore at the University of Tennessee at Chattanooga, majoring in Political Science with a concentration in International and Comparative Studies.
Alyssa Hatfield
Recipient of the Morris L. and Rebecca Ziskind Memorial Scholarships
Alyssa is passionate about making a positive impact on others and intends to become a speech and language therapist. She is attending Harding University majoring in communication sciences and disorders.
Elena Bowles
Recipient of the Kate Finlayson Memorial Scholarship
Elena is enrolled at Stevenson University, majoring in biochemistry. She is dedicated to pursuing a career in healthcare as a physician assistant (PA), with a focus on neurosurgery.
Introducing the New Hydrocephalus Resource Library
In 2024, the Hydrocephalus Association proudly launched the Hydrocephalus Resource Library, a comprehensive, centralized hub of expert-reviewed information on our website designed to empower individuals and families affected by hydrocephalus.
This dynamic digital library offers easy access to current, reliable resources tailored to every stage of the hydrocephalus journey. Users can search and filter content by topic, age group, or specific needs, whether someone is newly diagnosed, managing normal pressure hydrocephalus, or navigating key life transitions like starting school or college.
From treatment options and care strategies to personal stories and emerging research, the Resource Library empowers our community with the knowledge and tools to make informed decisions and live well with hydrocephalus. This initiative underscores HA’s ongoing commitment to education, support, and improving quality of life for all those impacted by the condition.
New and Improved:
The Latest Version of HydroAssist™ Puts Patients First
In 2024, the Hydrocephalus Association released a major update to HydroAssist, the first mobile app designed to help individuals with hydrocephalus track and manage their treatment.
The new version introduces an improved user experience and powerful new features that reflect the evolving needs of our community. Among the key enhancements are the ability to:
- Manage multiple patients, for families with multiple children or loved ones living with hydrocephalus
- Switch between patient profiles easily
- Personalize the app with patient and contact photos
- Assign permissions to Authorized users, including parents, spouses, and friends, to be able to add and edit information in the app
- Track headaches and other symptoms to share with the medical team.
A major structural update separates the patient profile from the account owner, allowing users, such as caregivers, parents, or patients themselves, to manage treatment data independently while maintaining secure, flexible access by loved ones. Authorized users are now granted default view permissions across the app, which can be customized as needed. You can learn more about the new features in HydroAssist in this video.
The updated HydroAssist app rolled out in July 2024, and users are required to transition to the new version. Upon updating, all existing treatment records remain intact, while patient details are migrated to a newly designated profile area. Users are encouraged to review and personalize their profiles, including uploading photos and completing health details for a more tailored experience.
As with every improvement to HydroAssist, this version was shaped by the feedback and insights of our users. We are deeply grateful to the community members who helped inform these changes.
HydroAssist is available for free through Apple’s App Store and through Google Play.
