A Time for Awareness | The Hope of a Cure
October 14, 2016, New York City
About The Vision Dinner
The Vision Dinner seeks to raise national attention about hydrocephalus, an incurable brain condition that affects 1 million individuals in the United States. Left untreated the condition is life-threatening. The event gathers families, researchers, philanthropists, business leaders and advocates to learn about promising research that will lead to a cure and to provide the opportunity to celebrate community members helping to make a difference. This year, the Vision Dinner will highlight one critical research problem, Posthemorrhagic Hydrocephalus (PHH), which is hydrocephalus caused by a brain bleed. It is the leading cause of hydrocephalus in children. The evening is underwritten by Craig and Vicki Brown, generous benefactors, to ensure every dollar donated is allocated to advance hydrocephalus research.
About the Hosts
Craig and Vicki Brown are the owners of the Greenville Drive Baseball Team and led the construction of the team’s award-winning stadium in the West End of downtown Greenville. Fluor Field and the Greenville Drive have proven to be catalysts for community engagement and economic growth and development in the region. Craig Brown previously spent 23 years as a senior executive in the advertising industry, most recently as President and COO of the Bcom3 Group. Over the course of his advertising career, Craig was a principal executive in the industry’s three most defining mergers, including the 2002 merger of Bcom3 and Publicis Groupe.
Vicki Brown is the Chairwoman of the New York City Vision Dinner. The Vision Dinner has become a major organizational strategy to increase awareness and funding of hydrocephalus. Under Vicki’s leadership, the organization through this event produced three awareness videos, launched a strategic public relations campaign and has raised over $1M and is on course to secure an additional $3M for PHH research. The Brown’s son, Jeff, was diagnosed with hydrocephalus at age 19. He has had 2 endoscopic third ventriculostomy (ETV) procedures over the past 11 years. Jeff earned his MBA degree in 2013 and was married in June of 2014.
2016 Keynote Speaker
Dr. David Limbrick, M.D., PhD, a researcher and Neurosurgeon-in-Chief at St. Louis Children’s Hospital, was invited to speak about his innovative work on PHH. Dr. Limbrick is an academic pediatric neurosurgeon with aligned clinical and research interests in improving the care and outcomes of children with hydrocephalus. Currently, he has a K23 Career Development Award from the NIH/NINDS investigating cerebrospinal fluid (CSF) proteins in PHH of prematurity and the implications of these proteins in long-term neurodevelopment.
In addition to the keynote address, several awards will be presented to heroes in the hydrocephalus community helping to make a difference. 2016 Honorees include:
James Spence – Sergeant James Spence is an Iraq war veteran forced into retirement after 11 years of
service. He was diagnosed with hydrocephalus after experiencing a traumatic brain injury while serving in Iraq. Sergeant Spence was misdiagnosed twice prior to discovering he had the condition. During this time of despair, Sergeant Spence vowed to help raise awareness and understanding of hydrocephalus and felt it was his “civic duty” to speak up. It is through his willingness to advocate for greater research on hydrocephalus that the Department of Defense included the condition as eligible for Congressionally Directed Medical Research Program funding, a historical first for the hydrocephalus community.
Dr. Michael A. Williams – Dr. Williams is an internationally recognized expert in the field of adult hydrocephalus.
He is actively involved in patient advocacy with the Hydrocephalus Association and joined their Board of Directors in 2014. He is a member of the scientific advisory panel of the Intracranial Hypertension Research Foundation and is a founding member of the Adult Hydrocephalus Clinical Research Network. In 2012, he was awarded a 3-year, nearly $1 million grant from the National Space Biomedical Research Institute to help develop and validate noninvasive methods of measuring spinal fluid pressure for use in space flight. Dr. Williams is a Professor of Neurology and Neurological Surgery at the University of Washington School of Medicine. His practice focuses on adult & transitional hydrocephalus and CSF Disorders.
Olivia Maccoux – Olivia suffered a brain hemorrhage (PHH) at birth and had her first shunt placed at nine
months of age. She has endured over 120 surgeries in her short 20 years. Despite all that she has been through medically, Olivia played four sports in high school and was awarded “Athlete of the Year” in 2014, which was the same year that she graduated on time from high school with Honors. She is now a junior at Augsburg College in
Minneapolis where she has been on the Dean’s list each Semester. She is studying Communications and ultimately hopes to work for a nonprofit in healthcare like HA. Olivia was recently featured on People.com for her heroic journey and fighting spirit.
Pipeline to a Cure: from Bench to Bedside
$3M Vision Dinner Challenge to Accelerate a Cure for Hydrocephalus
The Hydrocephalus Association is dedicated to moving promising new hydrocephalus therapies from bench to bedside through a vital collaboration between two key Hydrocephalus Association platforms – the Hydrocephalus Association Network for Discovery Science (HANDS) and its Clinical Research Networks.
This unique partnership between the newly launched HANDS initiative and the two established Clinical Research Networks, now known as the Hydrocephalus Association Pipeline to a Cure, links basic, translational and clinical researchers, thereby creating the most effective way to fasttrack groundbreaking therapies of the highest clinical standards. This bi-directional Pipeline allows researchers to test new theories and treatments with an eye towards immediate clinical applications thorough the Clinical Research Networks, while the expertise of the Clinical Research Networks actively shape the basic and translational science efforts of HANDS researchers to ensure meaningful improvements in the lives of patients.
The Hydrocephalus Association Pipeline to a Cure supported through the goals of the Vision Dinner is a three-year, three million dollar initiative. Commencing in 2016 the campaign will focus on Posthemorrhagic Hydrocephalus (PHH), the most prevalent form of pediatric hydrocephalus in the United States. Hydrocephalus is a complicated condition with multiple causes and a range of symptoms, impairments and mortalities. PHH is one of the most insidious forms of hydrocephalus. Children with PHH are an extremely vulnerable population, composed primarily of premature infants and, as such, likely to suffer from intellectual disabilities and the co-occurrence of epilepsy and cerebral palsy. High shunt complication and infection rates are especially common with PHH, as compared to some other forms Hydrocephalus.
Research into early identification of infants at risk for PHH has been accelerated through the HANDS CSF Repository. To date, the Hydrocephalus Association has funded the early stages of two drug therapies which show promise in preventing or stopping the progression of PHH through the Innovator Awards and other grant programs. One of these drugs is currently being examined for use in human clinical trials at an HCRN center through the Pipeline to a Cure and in collaboration with an industry partner. PHH, however, is too significant a condition to stop there and research on other therapies must advance to ultimately find cures.
Join our Vision Dinner Challenge to Accelerate a Cure for Hydrocephalus!