A Time for Awareness | The Hope of a Cure
November 2, 2018, 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 24 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.
2018 Award for Leadership
Jerold Chun, M.D., Ph.D.
Professor and Senior Vice President
Neuroscience Drug Discovery
Sanford Burnham Prebys Medical Discovery Institute
Dr. Chun is currently professor and the senior vice president of Neuroscience Drug Discovery at Sanford Burnham Prebys Medical Discovery Institute, with over 27 years of experience in academia and industry. He currently leads a team of 25 researchers in the study of genomic mosaicism (DNA sequence variation in brain cells) and lysophospholipid receptor signaling to understand and develop drug treatments for brain diseases such as Alzheimer’s disease, multiple sclerosis, and hydrocephalus. Dr. Chun previously held professorships at The Scripps Research Institute, the University of California San Diego School of Medicine, and also headed the Department of Molecular Neuroscience at Merck Research Laboratories. Among his achievements, he identified the first lysophospholipid receptor (1996), was first to demonstrate genomic mosaicism in the brain (2001) and its alteration in Alzheimer’s disease (2015). Dr. Chun is a recipient of over a dozen awards, has published ~300 scientific articles and three patents. He received M.D. and Ph.D. (Neuroscience) degrees through the Medical Scientist Training Program at Stanford University School of Medicine, and was a Helen Hay Whitney Fellow at the Whitehead Institute for Biomedical Research/MIT.
2018 Award for Service
Jill Morris, Ph.D.
Division of Neuroscience
National Institute of Neurological Disorders and Stroke
Dr. Jill Morris’s disease research portfolio consists of multiple neurological disorders comprising the hydrocephalus; neural tube defects (spina bifida); leukodystrophies and lysosomal storage disorders; inborn errors of metabolism; and neurofibromatoses. Her basic grant portfolio includes glia biology and methodology grants regarding gene therapy/delivery/RNAi technology. Prior to coming to the NIH, she was an Assistant Professor in the Department of Pediatrics in the Feinberg School of Medicine at Northwestern University and Children’s Memorial Research Center. Her laboratory studied and published multiple papers on the function of DISC1, a schizophrenia susceptibility gene. Previously, she was Senior Research Biologist in the Department of Neuroscience at Merck Research Laboratories where she directed research projects relating to bipolar affective disorder, schizophrenia, Alzheimer’s disease and Parkinson’s disease. Prior to Merck, she was a Senior Staff Fellow in the Unit of Molecular Neurogenetics at the National Institutes of Health where her research led to the identification and characterization of the gene responsible for the autosomal recessive neurodegenerative disorder called Niemann-Pick type C disease.
Pipeline to a Cure: from Bench to Bedside
$3M VISION DINNER INITIATIVE TO ACCELERATE A CURE FOR HYDROCEPHALUS
The Posthemorrhagic Hydrocephalus (PHH) Campaign, supported through the goals of the Vision Dinner, is a three-year, three million dollar initiative. Launched in 2016, the campaign seeks to bring awareness of and funding for research on PHH, the most prevalent form of pediatric hydrocephalus in the United States. PHH develops after a brain bleed and most often occurs in premature infants, although PHH can also develop in adults. Infants with PHH are an extremely vulnerable population and are likely to suffer from intellectual disabilities and the co-occurrence of epilepsy and cerebral palsy. Hydrocephalus patients with PHH also suffer from high shunt failure and infection rates, as compared to other forms hydrocephalus, relegating children to a lifetime of repeat brain surgeries to manage their condition. There is hope.
Guided by a diverse group of researchers including pediatric neurosurgeons, neurologists, and neuropsychologists and scientists in the fields of brain injury and development, cerebrospinal fluid (CSF) dynamics, and fluid barriers in the brain, HA identified the key areas of promise into PHH research that will be funded through this effort:
PREDICT PHH DEVELOPMENT
After a brain bleed, it is unclear why some children develop PHH and others do not. Biomarkers that predicted the development of PHH could lead to earlier intervention and improved outcomes.
PREVENT BRAIN BLEEDS
Preterm infants are particularly susceptible to brain bleeds due to developmental factors. By targeting the blood vessels that most often rupture, we could prevent bleeds in this vulnerable populations.
STOP BRAIN DAMAGE
Blood damages the brain through a variety of mechanisms. Discovering and stopping these blood-derived factors could stop the damage and prevent the development of PHH.
REESTABLISH CSF FLOW
After a brain bleed, it is believed that the blood and secondary scarring blocks the flow of CSF. Finding new ways to reestablish CSF flow could prevent PHH and minimize secondary injury mechanisms.
REPAIR BRAIN DAMAGE
PHH can damage the brain and also alter future brain development. Finding strategies to repair the brain will improve long term outcomes for those affected by the condition.
To date, we have secured nearly $2.6M toward our goal and look forward to engaging many more families in this effort to end PHH.
The 2017 Vision Dinner Helped Accelerate Hydrocephalus Research LEARN MORE