2009 Annual Report
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The Search for a Cure Begins Celebrating 25 Years ANNUAL REPORT 2009 Letter from the Board Chair We began 2009 with a change to our mission—to eliminate the chal- lenges of hydrocephalus—and pursued its implied direction tirelessly throughout the year. The board of directors and staff completed a five- year strategic plan that calls for the Hydrocephalus Association to drive the hydrocephalus research agenda. That agenda centers on a vision of improved quality of life for those who live with hydrocephalus and on eventually finding preventions and cures. Realizing our vision requires a lot more research—more scientists, more clinicians and more funding. Our plan called for us to begin funding research in 2009, and with your help we launched our inaugural Research Initiative grants for five young investigators. This half-million-dollar, two-year commitment represents a significant change in the hydrocephalus research landscape. Encouraging careers in and an influx of new talent into hydrocephalus research is a key part of what we must do to drive the research agenda. But ultimately we need to be in Washington, D.C. if we are going to directly influence our government’s investment in hydrocephalus research. We plan to hire a new CEO and build our presence in our nation’s capital. Direct funding of research and advocacy will be critical success factors in accomplishing our new mission. As we approach the 25th anniversary of the Hydrocephalus Associa- tion, we are amazed by the power of the relationships we have built with our membership. With so many volunteers helping us raise money and awareness, we are energized to fulfill our mission and make the neces- sary moves to improve the lives of our loved ones with hydrocephalus. Paul H. Gross Chairman, Board of Directors Celebrating 25 Years ANNUAL REPORT 2008 The Hydrocephalus Association Makes A Long Term Commitment to 2009 Research with Five Inaugral Grants Lysophosphatidic Acid (LPA) Signaling in study of the tissue response of the brain RESEARCH INITIATIVE: Hydrocephalus to hydrocephalus. IMPROVING PATIENT In this project, based at Scripps Research OUTCOMES AND MOVING Institute, investigator Yun C. Yung, with Effects of VEGF Agonist (rVEGF) and VEGF TO FIND A CURE mentorship from Jerold Chun, MD, PhD Antagonist (Bevacizumab) Treatment In 2009 the Hydrocephalus Association will study the role of a small lipid (called on Cerebrovascular Density and Perme- delivered substantial results with the LPA) that has recently been identified as ability, and Learning in a Kaolin Model of launch of our new Research Initiative. a cause of fetal hydrocephalus in mice, Hydrocephalus Fueled by the generosity of our donors, exploring whether there is a critical pe- Lead Investigator, Dr. Abhishek Deshpande the Association raised over $600,000, with riod during brain development in which and his mentor, Mark Luciano, MD, PhD at much of the funding coming from major intracranial bleeding is likely to lead to the Cleveland Clinic will employ an estab- gifts, to support this new effort. After hydrocephalus. Mr. Yung is a doctoral lished animal model of hydrocephalus to major deliberation over possible research student in molecular biology and brings a test whether treatment with pharmaco- program options, the Association’s board varied research background in cancer and logical agents can affect the development of directors, with leadership from its Re- neuroscience to his exploration of a cause and progression of chronic adult hydro- search Committee, decided on a strategy of fetal hydrocephalus. cephalus. Dr. Deshpande is a physician and to address a critical long-term problem doctoral candidate in neurosurgery who that affects the entire research ecosystem: Early Versus Late CSF Drainage Treatment seeks to integrate clinical and laboratory the shortage of dedicated researchers in Experimental Neonatal Hydrocephalus expertise in the research setting. focused on hydrocephalus. In response, At the University of Utah, Ramin Eskan- the Hydrocephalus Association crafted and dari, MD (investigator) and Pat McAllister, launched a Mentored Young Investigator PhD (mentor) will test their hypothesis After receiving Program. After receiving proposals from that delayed reservoir placement for scientists across the nation, a Scientific treatment of neonatal hydrocephalus proposals from and Medical Review Committee selected has consequences that can be measured five grantees: through MRI imaging, CSF evaluation, scientists across neurological assessment and examination Quantitative Measurement of of brain tissue. Dr. Eskandari is a fourth- the nation, a Ventricular Volume and Cortical year resident physician in pediatric Atrophy to Improve Diagnosis of neurosurgery. He brings basic research Scientific and Normal Pressure Hydrocephalus experience in both neuroendocrinology Under the leadership of Dana W. Moore, and hydrocephalus and a number of Medical Review PhD, with mentorship from Norman R. publications to this project. Relkin, MD, PhD at Weill Cornell Medical Committee College of Cornell University, this study will The Role of Angiogenesis evaluateCelebrating whether obtaining new informa- in Hydrocephalus 25 Yearsselected five tion from MRI scans can improve the diag- At Children’s Hospital Boston and Har- nosis of adult normal pressure hydroceph- vard Medical School, Joon W. Shim, PhD, grantees. alus (NPH). Dr. Moore is an accomplished with mentor Joseph R. Madsen, MD, will postdoctoral fellow in neuropsychology investigate the vascular biology of hydro- and a faculty position candidate. She will cephalus,ANNUAL proposing that hydrocephalus REPORT 2008 apply her considerable clinical experience might be mitigated by a pharmacological with patients suffering from head trauma approach. Dr. Shim is a postdoctoral re- and Alzheimer’s disease to neuroimaging search fellow in neurosurgery, and brings in hydrocephalus. biomedical engineering expertise to his education despite the challenges of hydrocephalus. These eight scholarships are generously funded by the: Anthony Abbene Scholarships Justin Scot Alston Memorial Scholarship Gerard Swartz Fudge Memorial Scholarships Mario J. Tocco Hydrocephalus Foundation Scholarship Morris L. and Rebecca Ziskind Memorial Scholarships These awards support future leaders in the hydrocephalus community. Congratulations to our 2009 recipients: Erin Rae Breedlove, Fayetteville, GA With committed volunteers Katelyn Dekoski, Bay City, MI Ryan James Derleth, Running Springs, CA around the country, HA is Lydia Gonzales, Las Vegas, NV Margaret Hackett, Chicago, IL providing more support Maria K. Nevarez, Pittsford, NY Justin Mark Salisbury, Willington, CT and raising more awareness Faye Elizabeth Zimmerman, Slidell, LA and financial support than ADVOCACY: CREATING A VOICE ever before. FOR HYDROCEPHALUS Our advocacy work has several components—grassroots, state and federal legislatures, and the National Institutes for Health (NIH) and other funding agencies. While in 2008 we worked the SUPPORTING PEOPLE & FAMILIES Hill, in 2009 we further developed our relationship with the NIH In 2009 we made a major investment in our capacity to provide and expanded our grassroots advocacy through our WALK pro- support and education to families coping with hydrocephalus. gram. The work begun in years past was rewarded in June 2009 Starting with technology, the Association initiated a restructuring by the NIH’s announcement of the first dedicated hydrocephalus of our website and committed to making our substantial informa- program, focused on improving shunts. We finished the year with tion resources on hydrocephalus (many of which were limited to a meeting of the 15 members of the trans-NIH working group on paper files) available on the site. While the results of this effort hydrocephalus to continue to advance our research agenda. won’t be available until the end of 2010, the goal is simple: to We recrafted our expansion program, renaming it our Partners increase access, and ease of access, to one of the best collections Network, to more easily support local groups and expand WALKs of information on hydrocephalus. The website is already our larg- as critical steps for building our grassroots advocacy efforts. The est medium for support, having received over 121,000 visits from Partners Network engages both local advocates and local com- 88,000 visitors for 2009! munities in the larger effort to develop more effective therapies Over the last couple of years we have continued to produce and eventually find a cure. The network is comprised of local and update our educational publications, including the following: support group leaders and WALK chairs, volunteer organizers who lead local fund- and awareness-raising walks. Our signature • About Hydrocephalus—A Book for Families (in English and event, the Hydrocephalus Association WALK program, grew Spanish) steadily in 2009, with 24 walks across the United States. With • About Normal Pressure Hydrocephalus (Adult-Onset) the leadership of these volunteers organizing support groups • Prenatal Hydrocephalus—A Book for Parents and WALKs, HA is providing more local support, raising more • Hydrocephalus Diagnosed in Young to Middle-Aged Adults money and educating more people than ever before. In fact, two • A Teacher’s Guide to Hydrocephalus of our former WALK chairs successfully got Congress to establish • Health-Care Transition Guide for Teens and Young Adults September as National Hydrocephalus Awareness month—thank • Directory of Pediatric Neurosurgeons