In 1983, a small group of parents whose children had hydrocephalus came together seeking community. The children were all patients of Dr. Michael Edwards at the University of California, San Francisco Medical Center. Dr. Edwards and Lori Howell, his neurosurgical nurse, graciously hosted a few small, informal gatherings after Emily and Russell Fudge expressed their feelings of isolation and frustration when their son, Gerard, had his second shunt revision.
This was a time very different from today. In the early 1980s there was no widespread public acknowledgement that the majority of shunts would need to be revised multiple times during a lifetime. There were no programmable or adjustable shunts. There were no MRIs. There were no such people as a Board-certified pediatric neurosurgeon or a Patient’s Bill of Rights. This was a time before the internet, leaving parents, patients, and loved ones to seek out the scant information available in libraries and from their doctors. And there was nowhere to turn for support and guidance.
In 1984, Emily and Russell decided to host a more formal meeting, asking Dr. Edwards to speak about hydrocephalus and inviting many of his patients. At that meeting, they proposed creating an organization that could provide personal support to families affected by hydrocephalus. Their idea was met with great enthusiasm. With a $1000 grant from UCSF and Dr. Edwards, the Hydrocephalus Foundation of Northern California was born. In 1986, it was incorporated and received non-profit status. From this heartfelt and unassuming beginning in 1983, the seeds for the Hydrocephalus Association were sown.
This year we commemorate our 30 year anniversary. We honor the resolve of this dedicated group of parents – Emily and Russell Fudge, Jennifer Henerlau, Pip Marks, and Cynthia Solomon – to create a place where people could come to find information, support, and friendship. Together they recognized the need for an independent, patient-focused organization to support individuals affected by hydrocephalus and to provide their families and friends, who were desperate for information, with life-changing educational materials and group interactions. Thirty years ago this determined group could never have imagined that the Hydrocephalus Association would become the nation’s largest and most widely respected advocacy group dedicated to hydrocephalus.
HA is currently governed by a Board of Directors and employ a staff of ten. Our Medical Advisory Board includes 19 prominent professionals, who are respected leaders in hydrocephalus research and treatment. We currently reach over 25,000 individuals via newsletter and over 160,000 visitors from across the globe to the website.
In July 2008, our Board of Directors made a bold decision to embark on a new initiative to directly fund research to advance understanding, improve diagnosis and treatment, and find a cure for hydrocephalus. This has propelled the association into a new phase, and this past summer, we moved our national headquarters to the Washington, D.C., area to be within easy access of the U.S. Congress, key federal agencies, and the National Institutes of Health (NIH).
Despite our rapid growth over the last 5 years, we remain committed to ensuring that our members are empowered with educational materials, informed about the latest research, and have access to quality health care. Our staff provides families and individuals with one-on-one personal support via phone, e-mail and social media (including more than 9,000 individuals on our Facebook page alone. Our extensive resource library provides educational information for specific situations and stages of life for people with hydrocephalus. We also provide opportunities for individuals to come together to share information and support one another through a national network of support groups and national conferences. Supporting the next generation of people with hydrocephalus, the Teens Take Charge program teaches teens to be advocates, and a scholarship program rewards accomplishments and perseverance for young people with hydrocephalus who are pursuing post-secondary educations.
Eliminating the challenges of hydrocephalus takes a wider and more literal meaning through our advocacy and research initiatives, which aim to raise both awareness and funds to find better treatments and a cure. We do this through our annual prize awarded to a resident in neurosurgery and through the Mentored Young Investigators program. We also provides direct grants to scientists doing basic research on the causes of hydrocephalus. Further, we support the research of our partners, such as the Hydrocephalus Clinical Research Network (HCRN), which conducts important clinical research on pediatric hydrocephalus, and actively support the establishment of an adult-focused component of the research network. HA-funded research has resulted in 20 presentations at professional meetings and four publications in peer-reviewed journals, with an additional three manuscripts currently submitted for publication. Evidence produced and disseminated by our research partners at HCRN has reduced post-surgical shunt infection by more than 35% across their institutions. The NIH also recently added hydrocephalus as a new research category in the NIH Research, Condition, and Disease Categorization (RCDC) reports, which provide consistent and transparent information to the public about NIH-funded research.
Over the course of the year we will highlight the major milestones of the Hydrocephalus Association. This walk down memory lane will include interviews with our founding members, members of our Medical Advisory Board and our Board of Directors. It will also include the dedicated group of individuals – YOU – who come to us seeking support and information and remain connected to us through Facebook, our website, our fundraising WALKS, our advocacy activities, our Support Groups, and our National Conference.
Do you have a memory you’d like to share? A photograph or two? Please email firstname.lastname@example.org and join us in commemorating the work of the Hydrocephalus Association over the past 30 years.
“Never doubt that a small group of thoughtful, committed, citizens can change the world.
Indeed, it is the only thing that ever has.”
― Margaret Mead