The Hydrocephalus Association hosted its annual Vision Dinner in New York City on Friday, October 6th. The evening brought together over 225 philanthropists, business leaders, scientists, patient advocates, and doctors for an educational and inspirational program highlighting the innovative research that aims to prevent or minimize the development of hydrocephalus after a brain bleed. This year actor and comedian Tracy Morgan and his wife, Megan, joined the dinner after being moved by the story of a young girl living with hydrocephalus and the challenges our community members face on a daily basis. Morgan connected with the cause personally as a result of a 2014 vehicular accident that left him with extensive injuries from which he fought back to recover.
The evening is underwritten by Craig and Vicki Brown, generous benefactors to the Hydrocephalus Association. The Vision Dinner currently serves as the central vehicle for supporting a focused research initiative into Post Hemorrhagic Hydrocephalus (PHH). Two years ago at the Vision Dinner, the Hydrocephalus Association launched a $3,000,000 three-year campaign to raise crucial funds to direct the association’s extensive research capabilities to find a cure for PHH.
The program included an interactive panel of three scientists who shared the state of their current research studies. Dr. Kristopher T. Kahle of the Yale School of Medicine is evaluating how a brain bleed impacts fluid production in the brain, causing the development of PHH. His goal is to identify a new therapeutic target to prevent the development of the condition. Dr. Shenandoah Robinson of Johns Hopkins University is determining if clinically available drugs can enhance the natural repair processes of the brain after a bleed in the hopes of reversing damage. Dr. Jennifer Strahle of the Washington University and St. Louis Children’s Hospital is investigating how blood is cleared from the brain after a bleed, in the hopes of identifying targeted therapies to assist that process and stop the development of hydrocephalus. Complementing the science shared during the evening, Aseem Chandra, Chair of the Hydrocephalus Association Board of Directors, and Melissa Kopolow McCall, this year’s Vision Dinner Inspirational Award recipient, shared their personal stories as parents of infants impacted by the condition.
“Listening to the scientists this evening share the advances in the lab toward preventing the development of hydrocephalus after a brain bleed or mitigating the injury caused to the brain is inspirational,” stated Vicki Brown, host of the evening which is now in its fifth year, and a mother to a son living with hydrocephalus. “It affirms that we have the capacity to solve this form of hydrocephalus for these children and families.”
The Vision Dinner and the Hydrocephalus Association Research Program
The Vision Dinners represent a multi-year initiative to raise awareness of hydrocephalus and its impact on patients and families as well as to support the Hydrocephalus Association Research Initiative to improve treatments and ultimately find a cure. In the first two years, the Vision Dinner focused on raising awareness relative to the clinical research capabilities of the Hydrocephalus Association. The first year highlighted how hydrocephalus can strike anyone at any time. The evening shed light on children, as 1-2 out of every 1,000 babies born in this country will have hydrocephalus, and the work of the pediatric-focused Hydrocephalus Clinical Research Network (HCRN). Click here to watch our video on the patients impacted by hydrocephalus.
In year two, the dinner noted that Hydrocephalus also impacts the elder population in a specific form known as Normal Pressure Hydrocephalus (NPH). Once accurately diagnosed, the symptoms of NPH can many times be reversed, but regrettably the condition is often misdiagnosed as dementia, Alzheimer’s and/or Parkinson’s disease. The newly launched Adult Hydrocephalus Clinical Research Network (AHCRN) was featured. Click here to watch our video on NPH.
In 2015, the focus turned to basic science and cure-oriented research as the association launched the Hydrocephalus Association’s Network for Discovery Science – known as HANDS. HANDS is a virtual lab, uniting and centralizing the world’s leading researchers and their work, providing access to the tools, specimens and the expertise of scientists and clinicians around the globe to expedite the development and implementation of innovative, cure-focused ideas. With three research networks in place, scientists and clinicians effectively have a place to move research studies from bench (the lab – HANDS) to bedside (the patient clinics – HCRN and AHCRN). Click here to watch our video on HANDS.
Two years ago the Vision Dinner served as the launching pad for the $3 million PHH Campaign to focus research on preventing the development of hydrocephalus. We are proud to announce that we are more than two-thirds of the way to meeting our $3 million goal. This is allowing HA to aggressively tackle the various forms and underlying causes of hydrocephalus, and the evening’s panelists showed the advances being made.Click here to watch our video on PHH.
The success of the Hydrocephalus Association Research Initiative, supported in part by the generous contributions made through the Vision Dinner, is reflected in the recent wins for research into the condition. In 2009, the Hydrocephalus Association launched its research initiative and began directly funding research to improve treatments and to find a cure for this complex condition. To date HA has committed over $6M to research and is now the largest non-governmental funder of hydrocephalus research in the country. You can see a list of all of the direct research funding we have provided on our website.
How has this investment paid off?
Clinical research from the HCRN has reduced shunt infection rates by 35%, has improved shunt life by 15% and we are more than halfway through a trial which will provide projectable results into the best location in the brain for the placement of a shunt. We are working with our networks to turn these into protocols that can be used in every hospital across the country. Also in 2009 and 2015 respectively, HA granted 2 brilliant scientists modest grants totaling $160K which allowed these scientists to continue to develop their research hypotheses and critical supporting data for the purpose of ultimately applying for larger public funds. This investment was not unlike providing seed money to young companies as they develop their entrepreneurial ideas and business models. Also in 2015, after the persistent work of our hydrocephalus advocates on Capitol Hill in conjunction with our Congressional allies, hydrocephalus became listed as an eligible condition for the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) funds. This past July, these two researchers, Dr. Bonnie Blazer-Yost and Dr. Jerold Chun, received grants through CDMRP totaling $2.4M to continue their respective ground breaking work. We also just received notice that Dr. John Zhang from Loma Linda was awarded a $1.7 million NIH grant for posthemorrhagic hydrocephalus (PHH) research. Dr. Zhang previously spoke at the 2016 PHH Workshop that we hosted with NIH. In our video with our Research Director, you can learn more about these studies and their potential to prevent the development of hydrocephalus. Finally, we will be launching our patient registry, completing HA’s research infrastructure and bringing a large pool of patient data to the scientific community, lending our collective patient experiences and voice.
And we are really only just beginning. As our initial work continues to take root and see success, we are turning our attention to funding larger grants that will unite scientists across disciplines to strategically and intentionally look into new areas that can yield quality improvements for individuals living with the condition as well as those yet to be born who are at risk. HA has achieved our respected standing among the scientific and political communities literally as a result of the efforts of people like the Browns.
“Our vision is a world without hydrocephalus,” stated Craig Brown, Treasurer of the Hydrocephalus Association Board of Directors. “The recent grants awarded to continue the ground-breaking work of these scientists is a powerful example of how, by early investment in the most promising research, we are helping to make this a reality.”