Support & Education
Academic Scholarships Awarded to 13 Young People
Announcing our 2022 Hydrocephalus Association Scholarship Recipients!
HA’s scholarship program was established in 1994 to provide financial assistance to capable and promising teens and young adults who live with the ongoing challenges and complexities of hydrocephalus. In 2022, we awarded scholarships to 13 bright young people to help them pursue their academic goals.
These remarkable young adults are not only successfully managing their hydrocephalus, they also excel in the classroom and give back to help their local communities.
Kamal will pursue a degree in film production. He wants to portray more characters in film and TV with medical conditions to show that everyone is unique and how they embrace their own special challenges.
Leyra is currently a freshman at Johns Hopkins University, pursuing a bachelor’s degree in East Asian Studies. Her career goal is to become a Foreign Service Officer with the U.S. Department of State.
A freshman at Paris Junior College, Anna hopes to transfer to Texas A&M to complete her degree in early childhood education.
Xavier is working toward finding success in the business world by pursuing a bachelor’s degree in finance at Indiana University South Bend. Though filmmaking is his first passion, he would love to eventually use his success in business to find a way to work with and fund film projects.
Brenna Hawk (Bren)
Bren is currently a high school senior and plans to attend Western Colorado University. She wants to be an elementary education teacher to help kids with learning disabilities and special needs, including hydrocephalus.
Vincent will pursue a bachelor’s degree in English, communications or journalism and hopes to be able to write about sports in his career, but also to have the opportunity to write about hydrocephalus to raise awareness.
Allison is currently a sophomore at Liberty University pursuing a bachelor’s degree in strategic communication and will pursue a master’s degree in library science. She currently works in the public library system and plans to continue her career there after graduation.
Piper has always loved designing and creating, which has led to her interest in pursuing a career in architecture and design. Her goal is to create structures that are eco-friendly and inviting to its inhabitants.
Sarah plans to pursue a degree in psychology at Colorado State University. Her goal is to be a counselor to children with disabilities and expand the awareness of hydrocephalus and other medical conditions.
Elizabeth will be pursuing her doctorate degree at Arizona State University to become a primary care physician where she hopes she can make an impact for those struggling with hydrocephalus.
Claire is studying to become an elementary special education teacher at the University of Missouri at Columbia (Mizzou).
Cassidy plans to pursue her degree in psychology. She hopes to use her experiences and knowledge of hydrocephalus to better treat her patients.
Hannah plans to pursue a degree in early childhood education with a minor in Kinesiology. A career in teaching will be most fulfilling to her and she believes she has a lot to offer students who have learning differences.
Life-changing Impact at Hydrocephalus Conference
How do you put a life-changing experience into words? For everyone in attendance from across the country and internationally, the 17th National Conference on Hydrocephalus, HA CONNECT, created memories and connections that have left a lasting impact.
HA CONNECT was our first in-person conference in four years and the response was exceptional with 537 people in attendance. Our conference featured 43 new speakers and over 75 speakers in total. To meet the needs of our community, we offered 80 sessions categorized into 8 different tracks, including 30 that were new.
We had a variety of topics discussed, ranging from new research studies, treatment innovations, and improving clinical care to living and thriving with hydrocephalus and related conditions.
Dr. Brandon A. Miller
Assistant Professor at the University of Texas
"This was one of the best conferences that I have attended due to the patient connection and interaction. More patients, scientists, and physicians should attend."
Prior to the start of the conference, we hosted a private roundtable discussion called EMERGE 2022 with nine innovative companies working on better treatments and diagnostics for hydrocephalus. The discussion focused on barriers that are slowing down technologies coming to the market that could dramatically improve patients' lives and the role HA could play together with our partners in changing the future of hydrocephalus.
Two keynote presentations were the center point of Friday and Saturday’s schedule.
- On Friday, Dr. John (Jay) Wellons, III, Chief of Pediatric Neurosurgery at Monroe Carell Jr. Children’s Hospital at Vanderbilt, gave an engaging and inspiring presentation sharing the lessons he has learned from patients and their families over his career. He delighted the audience by reading a passage from his new book, All that Moves Us: Life Lessons from a Pediatric Neurosurgeon, which he followed by a book signing.
- On Saturday, Dr. Michael R. Barratt, a NASA astronaut and research scientist, delivered an informative and moving keynote about how NASA’s space medicine programs, Translational Research Institute for Space Health (TRISH), are contributing to hydrocephalus research and expanding our understanding of the condition.
On top of our robust program, all attendees, which includes individuals living with hydrocephalus, parents, siblings, caregivers, and other loved ones, were able to connect with each other, as well as network with researchers, sponsors, and leading experts in the field. So much was also gained by the scientists and healthcare professionals in attendance. The ability to work with and interact with patients was invaluable.
Living with NPH
"Personally, I got a lot of good information that I can use for myself and peers. I was able to do a tremendous amount of networking and the feedback I received from patients, families, and providers was positive. I also loved interacting with the younger patients, and it helped me gain perspective."
Brand New Support Services
Transitioning from Pediatric to Adult Care
A major milestone for a young adult living with hydrocephalus is the transition from pediatric to adult medical care. Planning for this transition is vital and this year we published the Medical Summary for Transitioning Hydrocephalus Patient, in partnership with the American Society of Pediatric Neurosurgeons (ASPN). You can download this transition summary and fill it out with your current pediatric medical team.
Once complete, take this to your new adult neurosurgeon, neurologist, and any other members of your adult medical team you feel will benefit from understanding your journey with hydrocephalus. This includes a Physician’s Assistant, Nurse Practitioner, and other specialists.
We would like to extend a special thank you to Dr. Brandon Rocque, representing the ASPN, the HA Support and Education team, and the Medical Advisory Board, made up of both adult and pediatric providers, for their input and commitment to this effort. Click here to download our Toolkit for Transitioning from Pediatric to Adult Medical Care.
We partnered with the Child Neurology Foundation (CNF) to be a part of their new pilot program called the Neurology Social Services Network. The pilot program is powered by the Unite Us technology platform. We are now able to support our community with referrals to local, regional, and national partners who provide financial and/or professional support in social services including housing, medical expenses, legal services, and food insecurity, among other social needs.
Pen Pal Program
We added an additional component to our peer support program, HydrocephalusCONNECT. HA’s Pen Pal program is designed to support children between the ages of 7-12, to help them find real and lasting friendships with others that understand the journey with hydrocephalus. It is active on our website and pen pal requests are currently being accepted. A total of 5 pen pal requests have been completed since its inception in September 2022.
HA Spearheads New Coalition for Transition
The Hydrocephalus Association signed on as a founding member and co-leader of The National Partnership for Pediatric to Adult Care Transition (NPPACT). NPPACT is chaired by Diana Gray, HA President and CEO, and Sara Struwe, Spina Bifida Association. It is a multi-disciplinary group of stakeholders committed to advocating for federal programs, investments, and policies that will help ensure smoother care transitions, including developing and maintaining adult care settings designed to support adults living with serious, life-threatening, and disabling conditions that were initially diagnosed, treated, and managed in childhood. In December, Sara Struwe and Diana Gray met with the CMS Medicare Medicaid Coordination Office to discuss the healthcare transition cliff that many dually eligible individuals with chronic and debilitating conditions experience.