Our Advocacy Impact

We started our advocacy efforts in the late 1990s, representing the patient community at a handful of federally-hosted events. It was not until 2004 that we began to formalize an advocacy strategy when we put the wheels in motion for the first NIH sponsored workshop on hydrocephalus in September of 2005.  Workshop participants identified critical gaps in research and clinical treatment, developed strategies for improving the level of knowledge and inspired new collaborative opportunities. As an association, we were galvanized to address these issues and formalized both a research initiative and an advocacy initiative. See a timeline of the significant milestones in our work to advocate for more awareness and public research funding for hydrocephalus.

1999 Milestones

• HA presents at the Federal Drug Administration (FDA) sponsored conference, Shunt Technology: Challenges and Emerging Directions, held in Washington, DC. We were honored to be the only non-profit organization invited to present at the conference.
• Since 1988 the Medtronic PS Medical Robert H. Pudenz Award for Excellence in CSF-Physiology has been granted annually to a professional who has distinguished himself in the field of CSF physiology at the annual meeting of the International Society for Pediatric Neurosurgery. The 1999, award recipient, Dr. Harold Portnoy, presents his $5,000 award to the Hydrocephalus Association in honor of the work we do on behalf of people with hydrocephalus and their families, providing public recognition by the medical community of the expanding impact of the program and services offered by the Association.

2000 Milestones

• Board President Sally Baldus, Board member Mark Geiger and Director of Outreach Services Pip Marks represent the Association at the Patient Summit Conference in Washington, DC.

2003 Milestones

• Staff Dory Kranz and Pip Marks, Board member Cynthia Solomon, and volunteer Sam Marks participate in the annual legislative policy conference sponsored by the California Neuro-Alliance.

2005 Milestones

• First National Institutes of Health (NIH) sponsored workshop on hydrocephalus, Hydrocephalus, Myths, New Facts, Clear Directions, initiated by and presented with significant input from HA. The workshop brought together researchers, scientists, clinicians, parents, people with hydrocephalus, and advocates to challenge the existing dogma and mythology surrounding hydrocephalus. It also identified critical gaps in research and clinical treatment.

2006 Milestones

• We hold our first National Advocacy Day in Washington, DC. Over 120 individuals personally touched by hydrocephalus meet with 48 senators and 51 congressional representatives.

2007 Milestones

• House of Representatives Congressional Resolution on Hydrocephalus is proposed which expresses the need for research into this chronic neurological condition.
• “Priorities for hydrocephalus research: report from a National Institutes of Health–sponsored workshop” is written by Jack Walker, M.D., Michael Williams, M.D., and Pat McAllister, Ph.D., members of our MAB, and published in the Journal of Neurosurgery (Vol. 107 (5)).

2008 Milestones

• ICD-9 Code for Normal Pressure Hydrocephalus issued by International Classification of Disease – Centers for Medicare and Medicaid Services through the efforts of the Hydrocephalus Association and Dr. Michael Williams. ICD Codes are published by the World Health Organization (WHO) and are used to guide international comparability on the statistics collected to classify health disorders.
• Twenty months after our National Advocacy Day, both houses of Congress pass a resolution calling for more NIH support for hydrocephalus research.

2009 Milestones

• The Hydrocephalus Research Initiative is launched, adding the funding and support of research to HA’s mission. $600,000 is raised towards the effort.
• House of Representatives passes House Resolution 373 designating September 2009 as National Hydrocephalus Awareness Month.

2010 Milestones

• Our Teens Take Charge (TTC) program is launched with the sponsorship of the Medtronic Foundation. The program trains teenagers and young adults (and their siblings), who are affected by hydrocephalus, to take charge of the condition and become self-advocates with both health professionals and with their legislators.

2011 Milestones

• HA Chairman Paul Gross is appointed to the NIH National Institutes of Neurological Disorders (NINDS) Advisory Council. The Advisory Council advises the Institute on policy and procedures affecting research programs and provides a secondary review for all grant and cooperative agreement applications considered by the Institute for funding.
• HA Board sets a formal strategy for Advocacy activities.
• HA participates in the Congressional Hydrocephalus Caucus Briefing conducted in concert with the Pediatric Hydrocephalus Foundation and other organizations.

2012 Milestones

• We hold our second National Advocacy Day, Climbing Capitol Hill for a Cure, in Washington, DC. Over 220 individuals personally touched by hydrocephalus visit 96 congressional offices. Our inaugural Public Service Awards are presented to Representatives Andrews, DeLauro, and Lance.
• HA formally partners with the Hydrocephalus Clinical Research Network (HCRN), a collaboration of multiple research institutions working to dramatically improve the lives of children suffering from hydrocephalus. HCRN’s current organization consists of a central data coordinating center, and seven (7) research centers at high-patient-volume pediatric hospitals in North America.
• “Hydrocephalus” is included as a category in the NIH RePORTER, making hydrocephalus funding dollars by the government transparent to the public.
• Our Research Conference, Opportunities in Hydrocephalus Research: Pathways to Better Outcomes, co-sponsored by NIH and Seattle Children’s Hospital is held in Seattle, WA. The conference brings together the leading medical and scientific professionals involved in hydrocephalus treatment and research.
• Our headquarters move to Bethesda, MD, to support our current growth initiative, which includes expanding our advocacy and research initiatives while continuing our core services of providing support and education. New staff members join the HA team.
• We establish a planning task force to develop a specialized clinical research network focusing on adult hydrocephalus, modeled after HCRN. The Board votes to provide a seed grant of up to $50,000 to help advance the project and develop the resources for the research data collection effort through the use of a data coordinating center.
• Chairman Paul Gross leads the Trans-NIH Hydrocephalus Working Group Meeting discussing the NIH level of research support.

2013 Milestones

• Initial work is begun on the development of an Advocacy Steering Committee within the association, chartered to drive the association’s strategy around its advocacy efforts.
• HA joins a number of like-minded coalitions, which help us to leverage our efforts with a broader reach and stronger voice. HA works with these coalitions to promote the importance of NIH-sponsored research, resulting in a less devastating impact of sequestration on NIH budgets for brain research.
• HA advocates for the inclusion of hydrocephalus on the list of conditions eligible for funding under the Department of Defense’s Congressional Directed Medical Research Programs (CDMRP). Because of partisan battles within Congress over other issues, the language included in a bill passed by the House of Representatives was not included in the final DOD Appropriations bill passed by a conference committee of both the House and Senate.

2014 Milestones

• HA kicks off the Hydrocephalus Action Network, a volunteer network of individuals from the hydrocephalus community who have stepped forward to take action with elected officials.
• HA hosts a Congressional Hydrocephalus Caucus Briefing with the Pediatric Hydrocephalus Foundation in concert with the Rally for Medical Research to provide an overview of hydrocephalus and the individuals impacted to Congressional staff.
• On December 14, 2014, President Obama signs the Omnibus bill which has the inclusion of Hydrocephalus on the list of conditions eligible for funding under the Department of Defense’s Congressional Directed Medical Research Programs (CDMRP).

2015 Milestones

• HA Board Member, Tessa van der Willigen, joins the Executive Board of the PUSH! Global Alliance under the International Federation for Spina Bifida and Hydrocephalus.
• HA nominates two individuals to serve as peer reviewers for hydrocephalus research grants submitted to the Department of Defense’s Congressional Directed Medical Research Programs (CDMRP) Peer Reviewed Medical Research Program (PRMRP) portfolio. Annually HA continues to add patient reviewers to the panel to assure the patient voice is at the table.

2016 Milestones

• The PUSH! Global Alliance launches Global Report Cards to provide country-level information on hydrocephalus and spina bifida prevention efforts, access to care, quality of life, and availability of prevalence and mortality data.
• HA hosts a Congressional Hydrocephalus Caucus Briefing in concert with the Pediatric Hydrocephalus Foundation focused on the importance of research and the need for a patient registry. Experts from Autism Speaks and Johns Hopkins Medicine join the speaking panel.
• Dr. Bonnie Blazer-Yost, Professor of Biology at Indiana University-Purdue University Indianapolis, and Dr. Jerold Chung, Professor in the Degenerative Disease Program at Sanford Burnham Prebys Medical Discovery Institute, are awarded the first Department of Defense research grants totaling over $2,000,000 respectively through the Fiscal Year 2016 (FY16) Peer Reviewed Medical Research Program (PRMRP) Investigator-Initiated Research Award.

2018 Milestones

• HA launches the first Hydrocephalus patient registry in the United States. The HA Patient Powered Interactive Engagement (HAPPIER) is an online database collecting the experiences of people living with hydrocephalus in order to identify hydrocephalus research topics and to accelerate hydrocephalus research.

2019 Milestones

• HA hosts a Congressional Hydrocephalus Caucus Briefing in concert with the Pediatric Hydrocephalus Foundation to introduce new Congressional co-chairs and provide an overview to Congressional staff on the complexity and variability of hydrocephalus in the United States, particularly as it impacts our armed forces.
• HA represents the hydrocephalus patient community at the Centers for Disease Control Neurological Conditions Surveillance System (NCSS) Stakeholder Summit. The NCSS is a national neurological surveillance system started under the 21st Century Cures Act to track all neurological conditions in the United States.