History of The Hydrocephalus Association

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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.

Hydrocephalus Association Logo


 

1983

Medical professionals at the University of California Medical Center, San Francisco (UCSF), facilitate two informal gatherings of mothers of children with neurosurgical conditions. The seeds for our Association are planted.

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.

1983

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.

1984

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.

1985

1986

The Hydrocephalus Foundation of Northern California incorporates and receives nonprofit status. The first Board of Directors is inaugurated.

Our first educational booklet, About Hydrocephalus— A Book for Parents, is published. This is our first publication in a line of numerous publications that have become mainstays for individuals and families.

1986

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.

1988

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.”

1989

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.

1990

1991

Our name changes to the Hydrocephalus Association to reflect our expansion and growth.

Our first Directory of Pediatric Neurosurgeons is published.

Our first Fact Sheet on adult-onset normal pressure hydrocephalus (NPH) is published.

1991

1992

Hydrocephalus Association opens our first office in downtown San Francisco.

1992

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.

1993

1994

The first recipient of the Gerard Swartz Fudge Memorial Scholarship is named, inaugurating our annual Scholarship program.

TEAM I Hydrocephalus walks the Bay Bridge and raises $5,000, launching our TEAM Hydrocephalus program, later to be renamed our Hydrocephalus WALK program.

1994

1995

Our Hydrocephalus Fact Sheets now number 12, as we continue to publish trusted resources for individuals and families on hydrocephalus.

1995

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.

1996

1997

About Normal Pressure Hydrocephalus (NPH)—A Book for Adults and Their Families is published.

Our first Directory of Neurosurgeons for Adult Hydrocephalus is published.

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.

1997

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.

HA is honored by the Support for Families of Children with Disabilities for our outstanding achievements in serving individuals with disabilities and their families.

The first annual Thanks for Running 5K, organized by Amy Maynard, is held on Thanksgiving morning in Fitchburg, MA.

1998

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.

Prenatal Hydrocephalus—A Book for Parents is published.

1999

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.

2000

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.

2001

2002

7th National Conference on Hydrocephalus, Expanding the Vision, is held in Chicago, IL.

A Teacher’s Guide to Hydrocephalus is published.

Dory Kranz is hired as our first director of NPH and Older Adult Services, reinforcing our commitment to serving 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.

2002

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.

Healthcare Transition Guide for Teens and Young Adults is published, demonstrating the Association’s ongoing commitment to supporting the needs of children as they grow into adulthood.

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.

2003

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.

NPH gets press coverage nationwide, including The Today ShowCNN Headline News, and American Morning. A collaborative initiative by J&J/Codman and HA lead to this and other national press coverage.

Emily Fudge retires as Executive Director. Dory Kranz promoted as her replacement.

2004

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.

2005

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.

2006

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.

Long-term Outcomes in Patients with Treated Hydrocephalus is published in the Journal of Neurosurgery (Pediatrics). Written by Nalin Gupta, MD, et al, this article used information and statistics from the Hydrocephalus Association’s Database Registry.

Priorities for hydrocephalus research: a 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)).

2007

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.

Healthcare Transition Guide for Teens and Young Adults with Hydrocephalus is published.

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 $1M for HA research grants.

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.

2008

2009

The Board of Directors officially expands HA's mission to include the funding and support of research, formalizing our Research Program and prior research initiatives. $600,000 is raised towards the effort.

The 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.

Sobre la Hidrocefalia – Un Libro para los Padres is published. (Updated Spanish version of the Hydrocephalus booklet for parents and families.)

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.

2009

2010

11th National Conference, It’s All About YOU, is held at the Cleveland Clinic in Cleveland, OH.

The 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.

The Fudge Solomon Legacy Society is established to encourage and recognize all those leaving a legacy gift to HA.

2010

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 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.

Dawn Mancuso starts as our new CEO.

2011

2012

12th National Conference, Getting to the Heart of Hydrocephalus, is held in Bethesda, MD.

We hold our second National Advocacy DayClimbing 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 ConferenceOpportunities 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.

2012

2013

30th Anniversary of the Hydrocephalus Association.

HA partners with the Rudi Schulte Research Institute (RSRI) to award Dr. Mark Wagshul (Albert Einstein College of Medicine at Yeshiva University), a 3-year $600,000 research grant focusing on brain elasticity with the ultimate goal of driving the development of alternative treatments for slit ventricle syndrome.

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.

HA hosts its first WebinarWhat if It Isn’t Alzheimer’s or Parkinson’s, conducted by Dr. Michael A. Williams.

Craig and Vicki Brown host the first annual Vision Dinner in New York City.

2013

2014

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. 

We plant the seed to launch a third research network that will focus on accelerating cure-based outcomes through a virtual lab called HANDS — the Hydrocephalus Association Network for Discovery Science.

In November 2014, Pediatric hydrocephalus: systematic literature review and evidence-based guidelines, is published in a supplemental issue of the Journal of Neurosurgery: Pediatrics. Nineteen treatment recommendations are given along with the evidence-based strength of each recommendation.

In late 2014, the Adult Hydrocephalus Clinical Research Network (AHCRN) enrolls patients at five participating sites located throughout the United States and Canada.

HA’s advocacy efforts pay off. After two years of working with Senator Patty Murray (D-WA) to champion hydrocephalus research, 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). 

2014

2015

Diana Gray is appointed as the new President and CEO of HA.

Our first ever Innovator Awards are launched for Investigators in Hydrocephalus Therapeutics Research. Awards are given to five researchers.

HA’s third annual Vision Dinner exceeds its goal to raise $500k to support the launch of HANDS.

HA Board Member, Tessa van der Willigen, joins the Executive Board of the PUSH! (People United Against Spina Bifida and Hydrocephalus) Global Alliance under the International Federation for Spina Bifida and Hydrocephalus (IF). PUSH will go on to launch 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 nominates two individuals to serve as the first hydrocephalus peer reviewers for 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. 

2015

2016

Our three-year, $3-million campaign is launched to tackle the challenge of posthemorrhagic hydrocephalus (PHH), the most common and insidious cause of hydrocephalus in children.

HydroAssistTM is launched. It is the first mobile app that allows you to record and store your hydrocephalus treatment history and access it when you need it from your mobile device. Perfect for the individual living with hydrocephalus and the caregiver alike.

The HA Network for Discovery Science (HANDS) has over 100 members and held a groundbreaking workshop focused on posthemorrhagic hydrocephalus, the leading cause of pediatric hydrocephalus in the United States.

Two research groups are awarded grants through the Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP) to continue their HA-funded projects. Combined, these awards will total over $2.4 million after an initial investment of only $160 thousand from HA.

HA hosts the first Community Network Chair training to provide the information, resources, and tools our support group leaders need to lead robust local groups and engage in local outreach efforts. 

2016

2017

The Adult Hydrocephalus Clinical Research Network (AHCRN), a network of eight hospitals focused on adult hydrocephalus patients, adds three sites, including the first European site.

Through HA-supported research, the lab of Bonnie-Blazer-Yost tests drug candidates that could improve brain function in hydrocephalus patients.

At Sanford Burnham Prebys Medical Discovery Institute, Dr. Jerold Chun and Dr. Yun Yung tests drugs that can be administered to any patient who has a brain bleed to prevent the development of hydrocephalus.

We support two early-stage drug therapies and published six papers featuring HA-supported research.

HA’s first-ever Transition Summit brings together adult and pediatric neurosurgeons, neurologists, pediatricians and other medical professionals, health system administrators, patients, and parents to discuss solutions to improve transitional and longitudinal care for adolescents and young adults with hydrocephalus.

We launch HydrocephalusCONNECT, our peer support program with trained volunteers who serve as peer mentors for individuals calling the association seeking someone who is on a similar journey to themselves. 

More than 16,000 people are engaged through the #NOMOREBS (No More Brain Surgeries) campaign. The campaign highlights the shocking number of brain surgeries hydrocephalus patients endure and encapsulates the patient community’s frustration with the lack of advancements in treatment options.

Our Roadmap to a Cure campaign is launched, a bold effort to invest $20 million by 2020 to accelerate hydrocephalus research, expand patient support services and raise public awareness.

2017

2018

 

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. 

Eight scientists are awarded research grants totaling $1.65 million.  

Dr. Kristopher Kahle receives a National Institutes of Health (NIH) grant worth $1.8 million over five years, to dig deeper into new theories on why posthemorrhagic and postinfectious hydrocephalus develop and test drugs to prevent or minimize hydrocephalus after a brain bleed or infection.

The 2018 Vision Dinner celebrates the completion of a three-year campaign to raise $3 million to support a focused research initiative into posthemorrhagic hydrocephalus (PHH), the development of hydrocephalus after a brain bleed. 

A record-breaking 700 people attend HA CONNECT, HA’s 15th National Conference on Hydrocephalus, in Orange County, CA. 

A paper summarizing the findings from HA’s first-ever Transition Summit is published in the prestigious Journal of Neurosurgery(JNS) highlighting the challenges faced when transitioning from pediatric to adult care.

In Stitches: A Night of Laughs, our first-ever comedy fundraiser, takes place on April 27 in Los Angeles featuring Tracy Morgan. The event raises over $300k.

2018

2019

2019 marks 10 years since the launch of our Research Program. This makes HA the largest private funder of hydrocephalus research in the country, investing over $11M in research and awarding 40 grants to brilliant scientists.

In November, scientists from across the U.S., and five countries, convene at Washington University in St. Louis for our Driving Common Pathways Workshop. The workshop focuses on posthemorrhagic hydrocephalus (PHH) and the overlap between the mechanisms implicated in PHH and other forms of hydrocephalus.  

We launch two new Ask the Expert video series focusing on adults and on Normal Pressure Hydrocephalus with Drs. Mark Luciano and Abhay Moghekar.

Over 400 people join us in Los Angeles for HA’s 2nd annual In Stitches comedy fundraiser featuring Emmy Award-winning comedian and host, Conan O’Brien.

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. 

Congressman Christopher H. Smith (R-NJ) and Congressman Lloyd Doggett (D-TX) become the new chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus

2019

2020

We complete the first phase of our Community Research Priority Assessment. The goal of the assessment is to develop a top 20 list of research priorities that are driven by the needs of our community.

Four researchers receive major follow-up funding from the National Institutes of Health (NIH) for their HA-funded projects. 

We host the inaugural meeting of the new Scientific Advisory Board (SAB). The SAB will help shape HA’s research agenda, providing scientific leadership and guidance, in the years to come.

The HA Medical Advisory Board provides information and guidance on the Covid-19 pandemic as it relates to individuals living with hydrocephalus. This includes regular updates on our website as well as a special two-part virtual Q&A event to address concerns. 

Our National Conference on Hydrocephalus is held entirely online. A record 2,016 people from 72 countries participated in the virtual sessions and connected through the HA CONNECT mobile app, proving that not even COVID-19 can dampen the spirits and enthusiasm of the hydrocephalus community.

In response to the Covid-19 pandemic, our Community Network switches support group meetings entirely online, conducting 54 social gatherings and/or educational meetings with medical and other professionals joining as guest speakers. The first two weekly online support groups form and provide a lifeline for our community during the pandemic. 

For Hydrocephalus Awareness Month, we partner with the Bergen County Board of Commissioners to bring more attention to the condition. In a new video series, “Conversations With Our CEO,” Diana Gray, the Hydrocephalus Association’s President and CEO, interviewed Bergen County Commissioner Steven Tanelli about his passion for the cause and hopes for the future. 

2020

2021

The Adult Hydrocephalus Clinical Research Network (AHCRN) is awarded a $14M National Institutes of Health (NIH) grant to study shunt treatment for normal pressure hydrocephalus (NPH).

This is the first year for the Ralph Kistler Research internship. The internship is for undergraduate college students who are interested in the sciences, public health and non-profit operations.

We launch a new website that includes new and expanded resources and tips to help individuals manage their day-to-day life with hydrocephalus and caring for someone with hydrocephalus. This includes the new Timeline for a Successful Transition and downloadable and customizable PDF Teacher’s Guides. 

Senator Patty Murray stands with our community again this year and hydrocephalus was once again included as an eligible condition under the Fiscal Year 2022 Defense Appropriations Act. To date, scientists have received $14.4M in funding from the CDMRP. 

We host a Congressional “Virtual” Fly-In with 180 advocates from across the country, including 12 doctors, neuro nurses, and research scientists, participating in 78 online meetings with staff and legislators in the U.S. House and Senate. 

HA launches the Hydrocephalus Action Center, giving members of the hydrocephalus community all the tools they need through our website to deliver a message to their legislators. 

We join over 85 organizations in supporting the 21st Century Cures 2.0 proposal to authorize a new Center of Excellence at the Food and Drug Administration (FDA) that will focus on high prevalence and burdensome diseases, like those affecting the brain and central nervous system (CNS). 

2021

2022

Diana Gray and Amanda Garzon travel to the UK for the first-ever Parliamentary Reception focused on hydrocephalus hosted by the Right Honorable Michael Gove MP, House of Commons. We supported collaboration between HA and Harry’s HAT, and helped them launch their ‘Get-a-Head’

An unprecedented 10 Innovator Awards went to scientists for their innovative research.

In partnership with the American Society of Pediatric Neurosurgeons (ASPN), we publish our Medical Summary for Transitioning Hydrocephalus Patient, a tool patients can use in partnership with their pediatric neurosurgeon to successfully transition their hydrocephalus care to an adult provider. 

HA and the Spina Bifida Association launch the National Partnership for Pediatric to Adult Care Transition (N-PPACT). This new advocacy coalition will focus on addressing the challenges of transitioning from pediatric to adult care with a chronic medical condition in this country. 

A new robust version of HydroAssist launches which includes enhanced privacy restrictions, a headache and symptom diary, and the integration of our Physicians Directory, among other features.  

Through our UK partner non-profit, Harry’s HAT, the UK government awards $5,000 pounds Sterling toward the further development of HydroAssist. 

In October, we host an impactful research workshop in Houston, TX, with support from the Rudi Schulte Research Institute. The focus of the meeting is Improving Cognitive and Psychological Outcomes in Hydrocephalus, and we honored the legacy of Dr. Michael Pollay, an incredible physician and scientist with 99 publications to his credit.

After two years of collating survey responses from almost 900 representatives of the hydrocephalus community, our new Top 20 Community Research Priorities are published in the Journal of Neurosurgery.

2022

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