Going to NAMI, Meeting the Heroes

John McManamy Health Guide
  • This post is about mental health heroes. I’m back from three days of the NAMI CA convention held in Sacramento. My goal in attending conferences is to listen and learn. My unexpected outcome is enlightenment and inspiration. This particular gathering featured two NAMI superstars, Joyce Burland and Fred Frese.

    Joyce was honored by the convention for her service to NAMI. Twenty years ago, she came up with Family-to-Family (F2F), by far NAMI’s most successful initiative and certainly one of the best things going in the entire field of mental health. A lot of those first F2F graduates had been told by ignorant clinicians that they - the parents - were the cause of their children’s schizophrenia. Psychiatry even had a label for these terrible moms and dads - “schizophrenogenic.” Many of these graduates would become F2F instructors and NAMI advocates.

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    Finally, researchers have gotten around to studying F2F. After all these years, a recently published Johns Hopkins study has validated the benefits of this NAMI signature program, something 200,000 F2F graduates have known all along. I met Joyce at a NAMI gala dinner in Washington DC five years ago and it was an honor to say hi to her again. She has just stepped down this year as NAMI’s Director of Education.

    Fred Frese, the convention’s keynoter, is a legendary mental health advocate. Way way back, while in the military, Fred suffered a psychotic break. He recovered and went to work for a Fortune 500 company, only to later experience a complete breakdown. He was brought to a facility in Ohio, where he was told he had schizophrenia, which they said would only worsen over his lifetime, and that he would have to remain hospitalized for the rest of his life.

    Fred apparently wasn’t listening. He went on to get a PhD in psychology and an academic position. He has served on more boards and task forces and panels than you can count, including the President’s Freedom Commission on Mental Health, and does about 100 speaking gigs a year. For all his speaking, you will mostly find him listening. Over the years, I’ve run into Fred at numerous conferences - professional and scientific and advocacy. Last month, at the NAMI National conference in Chicago, I bumped into him in a hallway, on his way to an Ohio state caucus meeting, just another delegate. Yesterday, he was seated next to me at a session on serving vets, just another person in the audience.

    Then there are the people you don’t hear about: The guy I had a beer with in the bar who is organizing a fund-raiser for his local affiliate. The volunteers I had lunch with, running their affiliate on a shoe-string, leading F2Fs and getting Peer-to-Peer off the ground. A couple of women I met standing up over finger food, who are doing very innovative work reaching out to the vets in their community. The guy I met over a coffee who has done 157 theatrical performances to kids in schools over the past couple of years.

    Then there was a woman who plopped into an easy chair next to me in the lobby who just started telling her story. Her life on the streets, cleaning up her act, still working the streets, connecting people to services, driving them places, finding them food ...


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    Then there are the people who are well-known among our NAMI CA family. People like Mark Gale, who is very active in criminal justice and legislative issues. Basically, the state of California is solving its budget crisis by cutting services everywhere and creating chaos. But they’re doing it in a way that would have most people thanking them for it. Mark and his small band have dedicated untold hours to finding out what is really going on and alerting the rest of us. He was addressing us as a bigwig on the state NAMI board. His real title was one pissed-off father over what people are doing to his son.

    These are just a few of the heroes. As I said at the beginning, I go to listen and learn. I come back enlightened and inspired.

Published On: August 21, 2011