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Death of an Advocate: Glenn Koons

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Glenn Koons and Marlee Matlin

 

I first met Glenn Koons when I was invited to speak at a luncheon in Montgomery County, Pa., being hosted by the National Alliance on Mental Illness. It was one of the first speeches that I delivered after publication of my book and before my talk, NAMI Board Member Carol Caruso introduced me to Glenn. I was immediately struck by his easy-going manner. Carol bragged that Glenn was one of the first NAMI trained  Peer-to-Peer mentors in the entire nation. Glenn and I spoke for several minutes and I was impressed by his thoughtfulness and enthusiasm.

Our paths continued to cross during the coming years at various NAMI meetings and conventions. I was always happy to see Glenn and was thrilled when I learned that he had been one of only four NAMI peers who had been invited to the White House by President Obama to celebrate the 20th anniversary of the Americans with Disabilities Act of 1990.   Glenn wrote about the event for a NAMI blog.

A few weeks ago, I was asked by NAMI’s Darcy Taylor to write an article for NAMI’s VOICES publication. In my article, I mentioned three “consumers” who have inspired me. They are  Dr. Fred Frese, Diana Kern, and Glenn Koons. 

The day after I submitted my article, an email arrived telling me that Glenn was dead.

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Friends and Inspiration at NAMI Convention

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Rather than giving a traditional talk at the opening session of the National Alliance on Mental Illnesses’ national convention in Chicago last week, NAMI Executive Director Mike Fitzpatrick asked me to join him in a “conversation” about the state of mental health.   

I was worried because it was supposed to be for thirty-minutes. What could we possibly discuss during a half hour on stage that the more than 2,300 people in the audience would want to hear? Ironically, I only got to my fifth question when we ran out of time.

We began by talking about the shootings in Tuscon and Virginia Tech. How should NAMI members and advocates react when someone with an untreated mental illness causes such havoc? I immediately brought-up the ongoing criminalization of persons with mental disorders. Much of our discussion was about money, especially NAMI’s disturbing report, State  Mental Health Cuts: A National Crisis. Mike’s grim warnings about potential cuts to Medicaid and having the states take responsibility for federal funds allocated for persons with mental disorders were insightful and alarming.

Other topics included NAMI Standards of Excellence, welcoming diversity, making sure that consumers and parents had seats at the NAMI table, and the many positive changes that have come about because of NAMI. Mike rightfully bragged about Family to Family courses, In Our Own Voice, CIT training in juvenile facilities, and NAMI Walks which raise millions each year.

He ended by asking an important question: IF NOT NAMI — THEN WHO?  NAMI is the largest, grassroots mental health advocacy group in the U.S. Who will fight for those of us with mental disorders or family members with them?

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The Day Stigma Ends

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I’m always eager to testify or speak on Capitol Hill about the need for mental health care reform. Last week, Reps. Grace F. Napolitano (Ca-38 District) and Timothy F. Murphy (PA-18 District) invited five speakers to talk at a briefing sponsored by the Congressional Mental Health Caucus, which they co-chair.

Members of Congress don’t  show-up at briefings very often — at least the ones that I’ve participated in. When they do, they generally only stick around long enough to make a statement. After that, they move on to another event.  That’s fine because the most important faces at a congressional briefing are the legislative staff members. They’re the ones who actually draft legislation.Click to continue…

Top Notch, Inspirational Speakers!

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When I’m asked to recommend a speaker, I immediately mention four mental health advocates.

I’ve seen Fred Frese, PhD., talk for two hours and still leave the audience wanting more. Diagnosed with schizophrenia while in the U.S. Marine Corps, Fred could have easily ended-up in the back mental ward of a state institution, forgotten and   overlooked. Instead, he managed to win his freedom, take control over his symptoms and become a strident consumer advocate. Along the way, he earned a doctorate in psychology, ran a hospital ward and taught as a professor. As a speaker, he is an emotional powerhouse who causes listeners to leap to their feet.

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Behind the Scenes at Minds on the Edge

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Many of you are already aware and have seen MINDS ON THE EDGE: Facing Mental Illness, an hour long program broadcast on your local PBS television channel. It was released in October and the National Alliance on Mental Illness is pushing each of its chapters to show the film at various times this year.  I want to give you some background about how this show came together.
Not long after CRAZY: A Father’s Search Through America’s Mental Health Madness, was published, I  got a telephone call from Arthur Singer who said that he wanted me to be his guest at a lunch in Manhattan. He had read my book and was concerned about how jails and prisons had become our new mental asylums.  While I appreciated his interest, I couldn’t afford to fly to New York just to have lunch with him, I said. But he was persistent — and he also told me that he would arrange for my flight.
When the taxi dropped me off at one of New York’s most exclusive private clubs, I began to wonder who this guy was.