Families and researchers from across the country came together on Nov. 3 to celebrate the 10th Anniversary of HA’s Research Initiative. The event, held in St. Louis, MO, highlighted the successes of our research investments and honored the trailblazers who started it all.
“Since the start of our research initiative in 2009, we have worked diligently to build a comprehensive research program. Today, our program spans basic, translational, and clinical research and funds efforts to find a cure and improve the lives of those living with the condition, from the smallest preemies to seniors with Normal Pressure Hydrocephalus,” said Diana Gray, HA’s President and CEO, as she welcomed guests.
At the event, Paul Gross, past HA Board Chair and co-founder of the Hydrocephalus Clinical Research Network (HCRN) and the Adult Hydrocephalus Clinical Research Network (AHCRN), was presented with a Visionary Leader Award for his efforts to help launch and shape HA’s Research Initiative. He shared stories of how HA’s research ecosystem began and highlighted the individuals who helped make it successful.
Dr. Carolyn Harris, PhD, from Wayne State University, was honored with a Research Innovation Award. Dr. Harris, the recipient of HA’s 2018 Innovator Award, is testing a new shunt coating that stops cells from attaching to the shunt. Her goal is to create a shunt catheter that does not block, which would be a game changer for hydrocephalus patients.
“Shunt failure is a solvable problem. Better treatments for hydrocephalus are on the horizon. We need good mentors, we need support, we need encouragement and we need collaboration. Collaboration is a necessity in order to really make progress and the Hydrocephalus Association is really working hard in trying to help researchers toward that goal,” she said after accepting her award.
Dr. David Limbrick, MD, PhD, with St. Louis Children’s Hospital and Washington University School of Medicine, gave the keynote address about what the future holds for hydrocephalus research. Using the example of how a drug and gene therapy were developed to treat Spinal Muscular Atrophy in the 1990s and early 2000s, Dr. Limbrick said people should have hope that a medical therapy, and even a cure, for hydrocephalus is possible.
“I want to reassure you that progress is being made in the clinical management of hydrocephalus. Novel surgical treatments, novel surgical technologies are imminent. But really, like with Spinal Muscular Atrophy, we have to convince ourselves that the approach to hydrocephalus is to prevent it and cure it and that this is doable,” he told the audience. “It’s doable through team-based science and really probing these common pathways, enabling us to make transformative advances towards precision medicine for hydrocephalus…the need is urgent and significant and they’re counting on us.”
Capping off the evening was HA Board Chair Brett Weitz, who presented Stephanie Buffa Vogt with a Vicki Brown Volunteer of the Year Award. Stephanie has been living with hydrocephalus since she was 6 weeks old. She has attended almost every Hydrocephalus Association conference over the past 20 years and is a longtime HA peer support volunteer. She has been chair and co-chair of the St. Louis WALK to End Hydrocephalus since 2008, which has raised over $500,000 for HA’s support, education and research programs.
“I’ve been very lucky to not have to worry too much about having hydrocephalus – it’s just a blessing. That’s truly why I chair the walk every year and love meeting families because I want to see how I can help them and see what I can do. Thank you to all the scientists, all the doctors and everyone at the Hydrocephalus Association who works tirelessly to make sure that we figure out a cure for hydrocephalus,” she said.
The Research Dinner was live streamed from our Facebook page. To view the live stream, visit HA’s Facebook page, click on videos and select “A Celebration of 10 Years of Discovery”: https://www.facebook.com/HydroAssoc/.
10th Anniversary Research Dinner Photo Gallery: