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 In 1981, Emily and Russell Fudge’s profound journey with hydrocephalus began when their son, Gerard Swartz Fudge, received a diagnosis at the age of 11. Not far from them, Cynthia Solomon’s son Alex, 7 years old, had also been diagnosed with hydrocephalus. This was a time very different from today. In the early 1980s, there was no internet, leaving parents, patients, and loved ones to seek out the scant information available in medical books and from their doctors. There was no widespread public acknowledgment that the majority of shunts would need to be revised multiple times during a lifetime. There were no programmable or adjustable valves. There were no MRIs. There were no such people as Board Certified Pediatric Neurosurgeons and no Patient’s Bill of Rights. And there was nowhere to turn for support and guidance.

Both families were under the care of Dr. Michael S.B. Edwards, at the University of California San Francisco (UCSF). After Gerard’s second shunt revision, Emily and Russell expressed their feelings of isolation and frustration, spurring Dr. Edwards and his neurosurgical nurse, Lori Howell, to host a few small, informal gatherings of his patients. Emily met Cynthia at one of the very first meetings and the seeds of the Hydrocephalus Association were planted. It was 1983.

In 1984, they decided to host a more formal meeting, asking Dr. Edwards to speak about hydrocephalus and invite a large number of his patients. At that meeting, they proposed the idea to create an independent, patient-focused organization with the goal of providing personal support for families affected by hydrocephalus. It was met with great enthusiasm. With a $1,000 grant from UCSF and Dr. Edwards, and organized out of the basement of the Fudge home by a dedicated core group of individuals that included Emily and Russell Fudge, Cynthia Solomon, Pip Marks, and Jennifer Henerlau, they set their early priorities. Namely, to connect individuals and to provide resources.

In 1986, the Hydrocephalus Foundation of Northern California was incorporated and received non-profit status. (Our name would change to the Hydrocephalus Association (HA) in 1991 to reflect our expansion and growth). In this same year, About Hydrocephalus - a Book for Families was published. These two events were significant in the future trajectory of the association because it served to connect two key stakeholders to the fledgling group. Namely, the families, who now had an invaluable resource about hydrocephalus, and the pediatric neurosurgeons, who had a trusted resources to help their patients.

The theme of connection became central to the formation of the association and the development of its programs. With the About Hydrocephalus book in hand, Emily, Cynthia, Pip, and Jennifer began attending the professional neurosurgical society meetings. By connecting with neurosurgeons, they were able to recruit the best doctors, many of whom were the pioneers of pediatric neurosurgery, to serve on a newly established

Medical Advisory Board (MAB). Soon doctors wanted to be involved with the association; it was an honor for them. This opened new avenues for collaboration, fostering partnerships between the association and the medical community, and ultimately enhancing understanding and support for individuals with hydrocephalus.

When Cynthia’s son’s shunt kept failing, she decided to call the manufacturer and spoke with Marvin Sussman, a vice president with Cordis. It was apparent that he cared deeply about these patients and Cynthia realized that industry partners brought great value to the association, as well. In the early days, an industry representative served on the Board of Directors. Now our relationships endure through support of and collaboration on our support and educational programs. Connecting the companies with the patient community allowed for an exchange of information and learning for both the patients and the company executives, and it deepened a commitment to improve lives.

The founding members had the foresight to connect the three key groups who could improve care for the patients, thereby creating a strong organizational foundation for HA. These early connections - connecting families to each other and connecting the medical professionals and industry representatives to the families - facilitated growth and reach into new areas where gaps existed, specifically, with the federal government and the scientific community. The first significant achievement in this area was Cynthia’s tireless work to have hydrocephalus officially recognized by the National Institutes of Health (NIH) as an eligible condition to receive research funding. Since that time, HA has continued to serve as a catalyst for increased research dollars from NIH, other federal agencies, and the Department of Defense. We do this through direct advocacy as well as by connecting and inspiring scientists to focus on hydrocephalus through the Hydrocephalus Association Cynthia Solomon Resident’s Prize, our various funding mechanisms, and the three research networks. Those networks include the pediatric-focused Hydrocephalus Clinical Research Network (HCRN), the Adult Hydrocephalus Clinical Research Network (AHCRN), and the HA Network for Discovery Science (HANDS).

Over the last 40 years, we grew as our mission grew, working through new connections to build an international reach and reputation in both the patient and scientific communities. Forty years ago, could this group of determined and committed individuals have imagined that the Hydrocephalus Association would become the nation’s largest and most widely respected advocacy organization dedicated to hydrocephalus? We have brought on professional staff to work daily on our mission. We have a Board of Directors composed of business and legal professionals, entrepreneurs, and doctors, the majority with a direct connection to hydrocephalus as either individuals living with the condition themselves or loved ones. We have a Medical Advisory Board composed of 25 of the leading neurosurgeons, neurologists, neuropsychologists, neonatologists, and nurses. And we have deep relationships with both established and newly emerging industry partners who are working to improve the management of hydrocephalus.

At the core of all of these connections is the individual living with hydrocephalus, their family members, and their care providers. True to the initial intent, HA continues to bring the patient voice to every aspect of our work. And the staff honors the legacy of the founders by continuing to develop trusted resources for navigating the journey with hydrocephalus.