FEATURES
Leadership Transition: Recognizing Two Great Leaders
We are deeply grateful for the dedication of our remarkable board members, past and present. Serving as Board Chair requires not only significant time, but also an extraordinary level of leadership and commitment.
Jason Preston
Jason Preston served as Board Chair of the Hydrocephalus Association from the beginning of 2023 through 2024, and as a board member for nine years. “Jason’s ability to bring a unique and important perspective to any discussion is one of his superpowers. Father of Julian, who lives with hydrocephalus, Jason has been a tireless advocate for advancing hydrocephalus research,” said President and CEO, Diana Gray. "His leadership of the HA Board and his vision for where the Association could have the greatest impact continue to inspire us all."
Stephanie Vogt
Stephanie Vogt joined the Hydrocephalus Association Board in the summer of 2022 and was selected to begin her service as Board Chair in 2025. The Association has been a part of her life since childhood, and she is proud to bring her healthcare and business expertise to furthering our mission. Following in the footsteps of her mother, former Board Chair Debby Buffa, serving in this role has long been a dream for Stephanie. Both she and her sister Sarah have lived with hydrocephalus since early childhood, enduring a combined 36 surgeries. Stephanie has led the St. Louis WALK to End Hydrocephalus for 17 years, establishing herself as an inspirational and deeply committed leader.
"The Hydrocephalus Association is laser-focused on finding a cure for hydrocephalus and improving the lives of those living with hydrocephalus. My son’s condition makes everything about this mission personal, and there’s no better place to move the needle than with HA. It was a privilege to serve as HA Board Chair among such excellent people." — Jason Preston
Supporter Profile: Tessa van der Willigen and Jonathan Walters
Tessa and Jonathan’s journey began when their son David was diagnosed with hydrocephalus at two weeks old following a routine pediatric visit that revealed “sunsetting” of his eyes. He was rushed to Children’s National Hospital in Washington, D.C., where an MRI confirmed hydrocephalus and a shunt was placed the next day. He was hospitalized for five days – during the worst blizzard DC had seen in years.
With the initial diagnosis came much uncertainty of how to identify David’s symptoms – when he seems “not himself,” was he experiencing shunt malfunction, was this typical childhood behavior? Over time, they came to understand his “stable self,” building the confidence to navigate his complex medical needs. “We learned when to worry—and when to worry more,” Tessa reflected.
After years of headaches, culminating in “the one to end all headaches,” and a few misdiagnoses, he had a shunt replacement at age nine. David had also experienced serious cognitive decline due to ESES (Electrical Status Epilepticus during Slow-Wave Sleep,) which was reversed following the revision, much to everyone’s relief. Frequent nighttime grand mal seizures, requiring hospitalization, added to the family’s stress, and were eventually controlled with medication.
Despite these challenges, Tessa and Jonathan consider David one of the lucky ones. With the help of early interventions, specialized education, and strong family support, he has thrived. David embraced his condition, grew into a passionate disability rights advocate, and is now completing his master’s in special education.
Tessa and Jonathan learned about HA through another parent of a child with hydrocephalus, when David was around 2 1/2, and attended their first HA CONNECT conference in 1998. A defining moment came during the conference dinner dance, where they witnessed a vibrant, accepting community. That experience—seeing kids with all levels of impairment embraced joyfully—inspired lasting involvement. Since then, they’ve only missed two conferences, often tying the event into their family summer vacations. David’s younger brother Jacob also became a part of the HA community—first in Kid’s Camp and later as a sibling panelist.
"Hydrocephalus is part of my story. I’ve come to see it not as a limitation—but as something that shaped my strengths. HA helped me see that I wasn’t alone. It gave me a place to belong, to be understood, and to thrive." — David Walters
Their involvement grew steadily. They participated in the WALK to End Hydrocephalus and other local events. Tessa joined HA’s Board of Directors (2015–2024) and continues to serve on the Research and Finance Committees, helping shape HA’s strategy and impact in research.
David grew up surrounded by this community, empowered by acceptance and a sense of belonging. Today, he continues to stay involved with HA in many ways, always ready to support the cause. He considers his condition not just a challenge, but an asset—something that has shaped his purpose and advocacy.
Tessa, Jonathan and family have been valued supporters of HA since their start. When asked why they believe in HA, the reasons are numerous. They believe knowledge is power, particularly for families navigating hydrocephalus, and supporting HA ensures others have access to the tools and support they lacked in the early years of David’s journey. The HA community has offered comfort and strength, easing the isolation that can feel paralyzing.
They are also passionate champions of research. From the moment it was added to HA’s mission, they’ve been “all in.” They’ve witnessed remarkable leadership and exponential progress in just 15 years—far beyond what they imagined. From the launch of drug trials to breakthroughs in noninvasive solutions and neuropsychological research, they see real momentum. The collaborative energy HA fosters gives them hope for a better future for all those living with hydrocephalus.
Conversation with an Outstanding Volunteer
Trish Bogucki speaks with HA President and CEO, Diana Gray
Trish Bogucki was honored with our Vicki Brown Volunteer of the Year Award, along with Gary Chafee in Tampa at our 2024 HA CONNECT national conference. Both Trish and Gary are outstanding volunteers exhibiting tremendous leadership skills, compassion for others and commitment to the mission of the Hydrocephalus Association. Both live with Normal Pressure Hydrocephalus (NPH).
Unfortunately, Trish was not able to attend to receive her award with public accolades in the presence of 600 conference delegates as planned. Why? Because she had suffered a terrible fall down two flights of stairs, which landed her in the hospital with a broken elbow. As it turned out, she was in shunt failure, which required a new shunt placement surgery. Because Trish missed the award presentation, I decided to have a conversation with her about why she is one of our most passionate volunteers and patient advocates.
Trish initially encountered HA because she was searching for a legitimate resource on hydrocephalus and her neurosurgeon recommended HA as a resource she could trust. Her drive to volunteer came from her desire to communicate her treatment experience to encourage others. “I was paralyzed with fear over the impending shunt surgery. But it turned out to be so much less awful than I was expecting, and I wanted to share a positive outcome with other NPHers. So the peer support program gave me a perfect platform to do that.”
"So it's getting past the fear of brain surgery, and then on to the idea that your life is going to be so much better." — Trish Bogucki
Trish connects with family members and those living with NPH and allays their fears about surgery. “My main message is, it's no big deal. They are not cutting into your brain and taking it apart. That's how people describe shunt surgery. And I tell them that's a bunch of baloney. It's inserting this tiny little tube into a tiny little hole. So it's getting past the fear of brain surgery, and then on to the idea that your life is going to be so much better.” Further she stated, “once you get this thing going and it's working, and the valve is set properly, now you can go back to what you were doing, which for me is the gym and line dancing.”
When asked about her most difficult experience as a volunteer, she shared about a woman she had been talking with over a period of months. Her husband had NPH and was not doing well. Sadly, he developed blood clots and pneumonia from COVID, and passed away a month before getting his shunt procedure. Trish lamented how “sad it was to have gotten this close to what we thought was the finish line and then to lose the race completely.”
Trish also served on our Community Research Priorities steering committee and attended the culmination meeting in which the final priorities were discussed, debated, then voted upon. When asked about the experience, she stated,” I was blown away that the opinions or feelings from a little old lady would be listened to. Those priorities were accurately recorded, and it was amazing to me, especially when I got to see more of the viewpoint of the pediatric population. We both want less invasive methods of dealing with this condition.”
When asked about the most important purpose of HA, Trish emphasized our support and education programs. She works closely with HA Support Programs Manager, Lakisha Harris, whom she adores. Lakisha commented that “Trish has dedicated incredible amounts of time and effort to help educate and support individuals and their loved ones living with NPH. She selflessly gives of herself to ensure no one feels alone on their journey.” Trish made sure to share with me about how deeply she admires our Support and Education staff members, but spotlighted Lakisha, with whom she works most closely. Her description of Lakisha is “an angel walking the earth.”
TRISH BOGUCKI BIO
Trish currently serves on the NPH Taskforce, which provides guidance on the development of NPH educational resources, is a HydrocephalusCONNECT peer support volunteer where she communicates with countless individuals living with NPH via phone, email, and Facebook Messenger, and leads the national NPH Network (support group) conducted primarily through our fastest-growing closed Facebook group. Also, she has served on the Hydrocephalus Association Support and Education Committee, which provides strategic input into HA’s support and education programs, has written articles for our website, and has spoken at our NPH Research Workshop.
“Trish has dedicated incredible amounts of time and effort to help educate and support individuals and their loved ones living with NPH. She selflessly gives of herself to ensure no one feels alone on their journey.“ — Lakisha Harris, Support Programs Manager
Honoring the Service of Our Retired Board Members
In 2024, we honored several outstanding HA Board members as they retired from service. Calling their impact significant would be an understatement. Each completed the full three-term limit of Board service, and all remain generous supporters of HA’s mission. Much of the Board’s work grows out of the thoughtful deliberations and recommendations of our program and standing committees, where these leaders played key roles. Below is a summary of their leadership and committee service during their tenure.
Jason Preston
Jason Preston served as Vice Chair of the Executive Committee, and then Board Chair in 2023 and 2024. Jason served as Communications Committee Chair for six years, and continues to serve on the Finance Committee and the Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER) steering committee. In 2024, he launched a strategic group to examine the Association’s role in the commercialization of future treatments.
Pam Finlayson
Pam Finlayson continues to serve on the Scholarship Committee, where she reviews more than 100 applications each year. She also served on the Support and Education Committee for many years and has been a member of the Conference Program Planning Committee since 2018. In addition, she was instrumental in developing the Kids Camp program as part of the HA CONNECT Leadership Committee. Pam and her family generously support HA's research program through their Team Hydro fundraising efforts.
Teresa Mastrangelo
Teresa Mastrangelo served as a Vice Chair on the Executive Committee, as both Vice Chair and Chair of the Governance Committee, and as a member of the Audit Committee. Together with her husband Eric, she hosted a cultivation event at their home to encourage greater participation from supporters in the DC metropolitan area. Teresa continues to serve as a trusted resource and facilitated HA's Board of Directors stategic planning meeting in August 2025.
Dr. Michael Williams
Dr. Michael Williams has served as Chair of the Medical Advisory Board for four years, has co-chaired the HA CONNECT national conference since 2006, and has been a founding member of the Adult Hydrocephalus Clinical Research Network (AHCRN) since 2012. He co-chaired the 2017 Hydrocephalus Transition Summit Steering Committee and he continues to contribute as a member of the Research Committee.
Tessa van der Willigen
Tessa van der Willigen has served as Chair of the Finance Committee, Chair of the Governance Committee, Vice Chair of the Executive Committee, and Co-chair of the Research Committee. She continues to serve on the Research, Finance and Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER) steering committee. Tessa also co-chaired the 2017 Hydrocephalus Transition Summit Steering Committee and was instrumental in the development of a new resiliency program for parents of children with hydrocephalus.
Honoring a Legacy
Dr. Jack Walker’s Transformative Impact on the HA National Conference
In 1990, the Hydrocephalus Association (HA) hosted its second National Conference on Hydrocephalus in San Francisco, California—a milestone event that profoundly impacted one of its attendees, Dr. Jack Walker. He later reflected that the experience changed his life.
Since that pivotal moment, Dr. Walker has played a central role in shaping the conference’s growth and success for the past 34 years. As the longtime Medical Co-Chair, he has provided visionary leadership, guided program development, and encouraged medical colleagues from across disciplines to participate in this unique and inclusive educational gathering. From the beginning, the conference stood out by bringing together patients, families, neurosurgeons, neurologists, neuropsychologists, researchers, and medical device companies to learn and collaborate in an interactive setting.
Under Dr. Walker’s leadership, the conference has grown from 150 attendees and a modest number of sessions to nearly 600 attendees and 80 educational sessions across seven tailored audience tracks. This remarkable evolution would not have been possible without his dedication and leadership.
Beyond the conference, Dr. Walker has made an extraordinary impact on HA through his service as Chair of the Medical Advisory Board and as a member of the Board of Directors. His unwavering commitment to the hydrocephalus community over the past 40 years has touched countless lives. We were able to share our appreciation with Dr. Walker during our 2024 conference by honoring his leadership legacy in support of HA’s programs.
As Dr. Walker transitions into the role of Emeritus Medical Chair, we are pleased to announce that Dr. Ramin Eskandari, Chief of Pediatric Neurosurgery from the Medical University of South Carolina, will join Dr. Michael Williams as the new Medical Co-Chair. Together, they will carry forward the legacy of excellence and compassion that Dr. Walker has helped establish.
"Dr. Walker's leadership has been pivotal in shaping the success of the conference from its very inception. As a renowned neurosurgeon, advocate, and dedicated leader, his commitment to advancing the field of hydrocephalus and supporting the community has made a profound impact. His work will live on through the conference, continuing to inspire and drive progress for years to come." — Jennifer Bechard, Support Program Manager
Welcome to the New HA Staff Who Joined Us in 2024!
Our dedicated staff team is the backbone of our mission, ensuring the successful execution of all our programs. From providing vital support to individuals and families, to developing impactful educational initiatives—such as our national conference and research workshops—they lead the charge in advancing research through multiple award cycles aimed at finding better treatments and a cure. They manage critical communications, keeping our community informed and mobilizing advocates when urgent threats to patients or research funding arise. In addition, our staff drive key fundraising efforts like the WALK to End Hydrocephalus, Games for Brains, and grant acquisition, securing the resources needed to power our mission. Behind the scenes, they also ensure our business operations and stewardship programs run with the highest level of excellence.
Amy Britt
Donor Services and Database Specialist
Andrea Crossland
Donor Relations Manager
Devin Edwards
Digital Marketing Manager
Samantha Lanjewar
Research Programs Manager