In 1979, two mothers came together to share a secret: both women had grown children with severe mental illness. Against the forces of stigma and discrimination, they channeled their fears and frustrations to bring about positive change for their loved ones and others.
From this humble beginning emerged the National Alliance on Mental Illness - now known as NAMI - and a national grass roots movement was born. During the past four decades, thousands of parents, spouses, siblings, friends, and the ill have worked tirelessly to bring mental illness out of the shadows.
NAMI has built it's organization on four cornerstones: Support, Education, Advocacy and Research. Today, we are an alliance of more than 600 local Affiliates and 48 State Organizations who work in your community to raise awareness and provide support and education that was not previously available to those in need. NAMI's members work to bring hope and progress to thousands of people with severe mental illness.
Written by Mary Brieske, founding Member; Mary Simon was co-founding member
The National Alliance for the Mentally Ill of Brevard County had its formation in 1983-1984. Mary Brieske and Mary Simon, while working at Anthony's dress shop, discovered that they had something in common. Each has a son suffering from schizophrenia. They had both agonized for ten or more years over the fact that there were no services, no insurance coverage, no living accommodations, and a tremendous stigma connected with the disease.
Mary Brieske attended a prayer group service at St. Teresa's church in Titusville to get others to pray with her. When they heard of their plight, they suggested that they do something about it - turn the negative situation into positive energy. And so Mary Brieske and Mary Simon heard of the National Alliance for the Mentally Ill, centered in Washington, D. C. The information came from E. Fuller Torrey's book, "Surviving Schizophrenia." We called NAMI and asked how we could start the group. We were told there was no group in Florida, although there was a support group in Gainesville led by Patricia Wilkinson, since deceased. We started our affiliation with a $25 membership fee to NAMI.
We began our support group by posting notices in churches, bulletins, doctor's offices, libraries, and local newspapers. In one month the first meeting was held at Mary Brieske's home with seven families represented. The founding members were Mary Brieske, Mary Simon, John and Lillian Manning, George and Bobbi Kambourelis, Martha Franco, Edie and Ernest Anderson, and James Bidwell.
Lillian Manning became our Public Relations person and set up many TV and radio spots for us to air our concerns and maximize our membership. Lillian, since deceased, kept the history of our activities: pictures and newspaper clippings from which this information is being taken. She was so active and efficient.
Ann Purcell, of Orlando, saw one of the TV shows we did, and she called Mary Brieske to get information and Ann, in turn, started the AMI group in Orlando.
John Manning became our liaison to Macclenny State Hospital and to our legislators in Tallahassee and Washington, D.C., for which he made many trips. John also represented our group on the board of District Planning of HRS ADMH for two years.
Mary Simon and Mary Brieske attended monthly ADMH meetings at HRS in Orlando to try to get funding to improve the system but to no avail.
As time went on, the membership increased, we elected officers, and held monthly meetings for business and support (share and care). Jerry Allender, a Titusville attorney, availed himself for free services and procured our incorporation a tax exemption so that we could begin fundraising. We set up hotlines to talk to people suffering with family members, so we could advise them with what little knowledge we had of the system (very little system or services),
Gradually, we learned of other groups forming in Florida. We set up a meeting place at Maxene Kleier's farm, near Ocala, and there a state organization was founded.
Within a year, 1000 families had come together in the state organization and we had our first conference soon after. By the end of 1985, our Brevard group had grown to 137 families.
We had great hopes and plans that we put before the legislators for community villages, emergency teams, and home visits from case managers, so that our loved ones could live in the community in a protected environment close to their families. When a patient lives out on his own, he is very vulnerable. HUD housing leaves a lot to be desired. The patient is victimized in such a setting. They become the targets of drug pushers, thieves, pranksters, stigma, etc.
George Kambourelis represented our group on the Board for Mental Health now called Circles of Care. He has retired from his job and has returned and is once again on the Board of Circles of Care.
In a recent conversation with John Manning, we both agreed that nothing much has changed. The system works only for the worried well, not for those with a true neurological brain disorder. John stays on task at Macclenny State Hospital to assure that it stays in place - it too has been threatened many times.
Mary Brieske says her main objective now is to find suitable housing for her son. There is much work to be done and we are all wearing thin, growing old, and still have no peace of mind that our loved ones will have a safe haven after we're gone