History

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Since our initial gathering in San Francisco, CA, in 1983 as a parent support group to our national presence today as the leading provider of information and private research funding for hydrocephalus, the Hydrocephalus Association has significantly impacted the health care and scientific communities as well as the lives of individuals affected by the condition. The rich history of our association is what drives our core values and mission today. Below is a timeline of our significant milestones.

1983
  • The first newsletter of the Neurosurgery Parent Support Group is produced, beginning our tradition of providing resources and information to individuals. The newsletter is 2 pages long and includes articles on Vacation Tips and Blood Transfusions, as well as a teen-written piece by Jill Gregerson on celebrating our differences.
 
1984
  • With assistance from Michael Edwards, MD, pediatric neurosurgeon at UCSF and his staff, Russell and Emily Fudge organize a meeting for parents of children with hydrocephalus. Dr. Edwards speaks and pledges $1,000 from the department of neurosurgery to underwrite the formation of a parent support group.
  • Following this meeting, a core group of parents form a Steering Committee, meet informally throughout the year and ask 6 professionals to serve as medical advisors to their budding parent group.
 
1985
  • The steering committee decides on the name Hydrocephalus Foundation of Northern California, hosts four support meetings in the San Francisco Bay Area and the first family picnic, in Sonoma, California.
 
1986
  • The Hydrocephalus Foundation of Northern California incorporates and receives nonprofit status. The first Board of Directors is inaugurated.
 
1988
  • The 1st National Conference on Hydrocephalus is held in San Francisco, CA. Since their inception, our national conferences bring together medical professionals, representatives of health industry corporations, and individuals and families affected by hydrocephalus.
  • We exhibit at the annual meetings of the American Association of Neurological Surgeons (AANS) in Seattle, WA, and the Pediatric Section of the AANS/CNS in Phoenix, AZ. These meetings result in long-standing relationships with leading medical professionals working with us to improve the lives of individuals living with hydrocephalus.
  • The annual Resident’s Prize is established by Board member Cynthia Solomon. Established to encourage continued interest and research in hydrocephalus, the prize is awarded to the most promising research paper relating to hydrocephalus by a neurosurgical resident. The paper is presented at the annual Pediatric Section meeting of the AANS/CNS.
 
1989
  • Emily Fudge becomes the first Executive Director.
  • Our first Resident’s Prize is awarded to Dr. Eric Altschuler for his paper titled, “Management of Persistent Ventriculomegaly due to Altered Brain Compliance.”
 
1990
  • The 2nd National Conference on Hydrocephalus, Hydrocephalus: 1990 Perspective, is held in San Francisco, CA.
  • A one-day Health Insurance Forum is held in San Francisco, CA, to address the current issues of importance to our members. This tradition has carried on through guest speakers and timely topics at our local Support Group meetings around the country.
 
1991
  • Our name changes to the Hydrocephalus Association to reflect our expansion and growth.
  • Our first Fact Sheet on adult-onset normal pressure hydrocephalus (NPH) is published.
 
1992
  • Hydrocephalus Association opens our first office in downtown San Francisco.
 
1993
  • Our 3rd National Conference on Hydrocephalus, Meeting the Challenge, is held in Monterey, CA.
  • The LINK Directory is launched to provide our members with direct access to other families and individuals coping with the complexities of hydrocephalus. Members can voluntarily be included in the directory, which lists name and contact information.
 
1994
 
 
  • TEAM I Hydrocephalus walks the Bay Bridge and raises $5,000, launching our TEAM Hydrocephalus program, later to be renamed our Hydrocephalus WALK program.
 
1995
  • Our Hydrocephalus Fact Sheets now number 12, as we continue to publish trusted resources for individuals and families on hydrocephalus.
 
1996
  • Our 4th National Conference on Hydrocephalus, Knowledge is Power!, is held in Monterey, CA.
  • Our website is launched! People from around the world now have access to our resources.
 
1997
  • Our Medical Advisory Board expands to 14 hydrocephalus experts. The MAB convenes annually at the  meeting of the Pediatric Section of the AANS/CNS to talk about issues of interest to parents/patients/professionals and formulate plans to address them.
 
1998
  • Our 5th National Conference on Hydrocephalus, Focus on the Future, is held in Washington, DC.
  • Pip Marks formally joins the Association as our Outreach Coordinator, allowing us to expand our support and education services.
  • First annual Thanks for Running 5K, organized by Amy Maynard, is held on Thanksgiving morning in Fitchburg, MA.
 
1999
  • 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
  • 6th National Conference on Hydrocephalus, Hydrocephalus 2000: Forward Together, is held in Scottsdale, AZ.
  • 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.
 
2001
  • ETV Alert Cards are created by NMT Neurosciences, Inc. (now Integra LifeSciences Corporation), and donated to HA for distribution to members with ETVs. As Emergency Rooms have no way of knowing a patient has had an ETV from a catscan, these cards allow members to communicate their condition to ER doctors.
  • A Consensus Statement on Physical Activities for Children with Hydrocephalus is approved by our Medical Advisory Board.
 
2002
  • 7th National Conference on Hydrocephalus, Expanding the Vision, is held in Chicago, IL.
  • Dory Kranz is hired as our first director of NPH and Older Adult Services, reinforcing our commitment to serve individuals of all ages living with hydrocephalus.
  • Our Scholarship Program grows. The 2nd scholarship fund is endowed in memory of Morris L. Ziskind and the 3rd scholarship fund is endowed in honor of Anthony Abbene.
  • TEAM East Coast holds its first walk around Burke Lake, VA. This is the first WALK outside of San Francisco and is organized by Mimi Kramer Roberts.
 
2003
  • Hydrocephalus Database Project commences. The goal of this project is to identify and track key issues facing individuals and families living with hydrocephalus. Board member, and designer of the database, Cynthia Solomon, presents a preview of preliminary statistics at the annual meeting of the Pediatric Section of the AANS/CNS.
  • Board members Emily Clark Farrell & Mark Geiger, both individuals living with hydrocephalus, complete the Maui Marathon, raising more than $17,000 for HA.
  • 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.
  • The Visionaries documentary series season 10 spotlights the Association on PBS stations across the country.
  • 10th annual TEAM Hydrocephalus Angel Island Walk.
 
2004
  • 8th National Conference on Hydrocephalus, Hydrocephalus 2004: 20 years of Support, Education and Advocacy, is held in San Francisco, CA.
  • Our quarterly newsletter is now available electronically.
  • Emily Fudge retires as Executive Director. Dory Kranz promoted as her replacement.
 
2005
  • 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
  • 9th National Conference on Hydrocephalus, Unity and Diversity: Learning from One Another, is held in Baltimore, MD.
  • 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
  • House of Representatives Congressional Resolution on Hydrocephalus is proposed which expresses the need for research into this chronic neurological condition.
  • Regional Support Group Expansion Project initiated to aggressively expand the number of support groups offered around the United States through our Support Group Network.
 
2008
  • 10th National Conference on Hydrocephalus, It’s About Life, is held in Park City, UT.
  • Boozle Bear, a teddy bear with a shunt, is developed by Dory Kranz and Sarah Zadorozynj. Boozle serves as a teaching tool for doctors, nurses, parents and children. Anyone can easily perform “surgery” on Boozle with an actual shunt inserted from the head to the abdomen.
  • TEAM Hydro participates in the first Alcatraz Sharkfest in the San Francisco Bay. Brothers Peter and Sam Finlayson, along with two friends, swim in recognition of their sister, Kate, inspired by her courage living with hydrocephalus. In November 2010, Kate passed away from complications with hydrocephalus. TEAM Hydro continues to swim in memory of Kate and since 2008 TEAM Hydro has raised over $320,000 for HA.
  • First school WALK held in Helen Wilcox Elementary School, Oroville, CA, raises $4,300 and has all 600 students participate.
  • 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
  • Mentored Young Investigator (MYI) program is started, with 5 awards made to new researchers interested in hydrocephalus. The MYI program intends to stimulate innovative research such that scientists go on to apply to various programs at the NIH for further grant funding, thereby keeping research on hydrocephalus active and ongoing.
  • House of Representatives passes House Resolution 373 designating September 2009 as National Hydrocephalus Awareness Month.
  • HA Support Groups can be found all over the country with groups in Alabama, Arizona, California, Colorado, Florida, Georgia, Illinois, Iowa, Maryland, Massachusetts, Missouri, New Jersey, New Mexico, New York, Ohio, Oregon, Pennsylvania, Texas, Utah and Washington.
  • Our WALK program expands, with over 20 Hydrocephalus WALKS held throughout the U.S.
 
2010
  • 11th National Conference, It’s All About YOU, is held at the Cleveland Clinic in Cleveland, OH.
  • Second round of the Mentored Young Investigator grants are awarded. Two previous MYI grantees submit applications for continued funding of hydrocephalus research to NIH.
  • Our web-based Hydrocephalus Resource Library is launched. This online library contains hundreds of articles on hydrocephalus and related topics. We continually add new submissions that have been reviewed by our professional members.
  • HA uses Facebook and Twitter to get the message about hydrocephalus out to a larger network active in the social media sphere.
  • 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
  • We launch A Reason for Hope, a five-year research campaign to focus our efforts on high-yield research strategies that will develop ways to treat, prevent and cure hydrocephalus. Since committing to support and fund research in 2009, our funded grants now total $1,367,000.
  • HA awards $400,000 in Established Investigator grants on cerebrospinal fluid (CSF) dynamics to Dr. Miles Johnston (University of Toronto) and Dr. Pat McAllister (University of Utah). The long-term goal of these grants is to create therapeutic interventions – such as a pill – that could control intracranial pressure.
  • 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.
  • Our 2011 WALK season, with the theme of 1 Million Reasons to WALK, raises $1 million and grows to 10,000 participants nationwide. This is the largest movement in the world representing people affected by hydrocephalus.
  • Inaugural MX for Children event held in Seattle, WA, to raise money for Children’s hospitals across the country. MX for Children holds events in St. Louis, Houston, Toronto, Seattle, Salt Lake City, and Las Vegas, in conjunction with the Monster Energy Supercross tour.
  • Kids to Cure Hydrocephalus, a combined public education & fundraising initiative for schools, is established in our WALK and Special Events portfolio, making it a reproducible program for schools around the country.
  • HA participates in the Congressional Hydrocephalus Caucus Briefing conducted in concert with the Pediatric Hydrocephalus Foundation and other organizations.
 
2012
  • 12th National Conference, Getting to the Heart of Hydrocephalus, is held in Bethesda, MD.
  • 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 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
  • 30th Anniversary of the Hydrocephalus Association.
  • HA awards Dr. Timothy Vogel (Cincinnati Children’s Hospital Medical Center) a 3-year $400,000 Research Focus Area grant on advancing the understanding and control of normal and abnormal regulation of cerebrospinal fluid (CSF) production, flow, resorption, pressure, and pulsatility as they relate to the etiology, progression, and resolution of congenital or acquired forms of hydrocephalus in neonates, children, adults and/or the elderly.
  • Craig and Vicki Brown host the first annual Vision Dinner in New York City.
 

 

 

 

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