A sense of community (physical and emotional well-being) is essential to a patient and his/her family ~ National Hydrocephalus Foundation encourages you to search through our website for the beginning of your education.
We also encourage you to contact us for further information or to ask questions. Mind you, we are not medical professionals, but we have a vast knowledge on hydrocephalus and other related medical conditions. Our Executive Director, Debbi, has hydrocephalus herself. She will be happy to speak with you and share some personal insights.
History and Mission of the National Hydrocephalus Foundation.
The National Hydrocephalus Foundation (NHF) was incorporated in the state of Illinois in 1979 as a voluntary, not-for-profit, 501(c)(3), public service organization.
The objectives of NHF are:
- To assemble and disseminate information pertaining to hydrocephalus, its treatments and outcomes
- To establish and facilitate a communication network among affected families and individuals
- To help others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family
- To increase public awareness and knowledge of hydrocephalus
- To promote and support research on the causes, treatment and prevention of hydrocephalus
- In addition to providing the public with informational brochures, NHF offers a variety of help guides, maintains a reference library, videos/CD’s on hydrocephalus, has support groups, will assist others in starting an NHF support group in their area, and publishes a quarterly newsletter, Life~Line.
The founders, Jim and Linda Mazzetti, have a son who was born with the condition of hydrocephalus.
Being teachers, (Jim has a Masters Degree in Environmental Science and Linda has a Masters Degree in Health Services Administration), they set out to educate themselves on hydrocephalus so that they would be prepared and to help their son in any way possible. They spent hours at libraries, met with other parents and, started a support group in which they shared the new information they learned.
Soon other families from neighboring cities and states began calling Jim and Linda in order to educate themselves. In 1979, it was decided to file the necessary paperwork and make Know Problems of Hydrocephalus (the original name of National Hydrocephalus Foundation) a non-profit, nationwide group.
Jim and Linda are both still active with the organization. Their son, J.D., holds a Master’s Degree in Psychology and is working for the state of Wisconsin. View our journey in the “Everything is Possible” article by clicking here.
Our Executive Director
Debbi Fields was diagnosed with hydrocephalus as an adult. Her neurosurgeon felt that she had mostly likely been born with the condition and that she became symptomatic when her body was unable to compensate for it any longer.
Shortly after Debbi was implanted with her shunt, she set out on a quest to educate herself on hydrocephalus and to (hopefully) meet and interact with others whose lives were affected by hydrocephalus – both children and adults.
Finding very little in the local libraries, she contacted state and government agencies to obtain information. While doing this research, she encountered a magazine, which had an article on “Self Help Groups.” She bought the magazine and found the listing for the National Hydrocephalus Foundation. She called and made contact with the executive director, Warren Barshes – who not only sent her educational material, but also personally contacted her and answered all of her questions. She then became NHF’s adult peer contact, so that she could assist other adults with hydrocephalus and/or their families.
Debbi started a local support group in 1992 for families and individuals dealing with hydrocephalus. Debbi became the executive director of National Hydrocephalus Foundation in 1997.
Board of Directors
Executive Director: Debbi Fields
President/Treasurer: Michael Fields
Secretary: Jaynie Dunn
Junior Director: Sarah Dunn
Board Members: Kathy Lancia
Medical Board of Advisory
Head of Medical Advisors:
Michael G. Muhonen, M.D.
William Loudon, Ph.D., M.D.
Michael Levy, Ph.D., M.D.
Bradley Noblett, M.D.
Laurie L. Ackerman, M.D.
Jeff Chen, M.D.
Joffre E. Olaya, M.D.