Friday, July 25, 2014

Jon, if you are reading this - still advocating my heart out for AOT in TN!

Kudos to the Stanley Family for their generous donation this week to the Broad Institute for psychiatric research!

Jon Stanley was my first mentor and my first point of contact with the Treatment Advocacy Center back in 1997. He is the one who first encouraged me to start a grassroots advocacy effort to implement an Assisted Outpatient Treatment law in Tennessee.  To hear him tell his story firsthand is truly inspiring. He and his family "get it". 


Speaking of families who "get it" ...

I'd like to invite you to join our new national nonprofit that was launched this week, Treatment Before Tragedy, of which I'm a founding member.  We are mothers, fathers, sisters, brothers, grandparents, aunts, uncles and friends who believe our loved ones deserve the best possible treatment and care before tragedy happens. Please feel free to share this communication with others.


Here's the article about the Stanley's generous donation for psychiatric research:

BOSTON — In the largest-ever donation to psychiatric research, Connecticut businessman Ted Stanley is giving $650 million to the Eli and Edythe Broad Institute of MIT and Harvard. The goal — to find and treat the genetic underpinnings of mental illnesses — was inspired by a family experience.
Ted Stanley made his fortune in the collectibles business. He founded The Danbury Mint, a company (later MBI, Inc.) whose first product was a series of medals commemorating the biggest scientific achievement of its time: the moon landing in 1969. While his business grew, his son Jonathan Stanley grew up as a normal Connecticut kid. Until, at age 19, Jonathan came down with bipolar disorder with psychosis, which got worse over the next three years.
“We’ll call it the epiphany from my dad’s standpoint at least,” Jonathan Stanley remembered of the turning point in his illness. “I went three days straight running through the streets of New York, no food, no water, no money, running from secret agents. And not surprisingly, after I stripped naked in a deli, ended up in a psychiatric facility.”
Jonathan was a college junior at the time.
“My dad came to visit, and he got to see his beloved son in a straitjacket,” Jonathan Stanley said.
The Stanleys were lucky. Jonathan responded well to the lithium, then a newly-approved drug. He went on to graduate from college and law school, too. Yet along the way, his father had met other fathers whose sons did not respond to treatment. He met other families who had to keep living with uncontrolled mental illness.
Ted Stanley said that gave him a focus for his philanthropy.
There was something out there that our son could take, and it made the problem go away,” he said. “And I’d like to see that happen for a lot of other people. And that’s why I’m doing what I’m doing.”
What he’s doing is donating $650 million, the bulk of his fortune, to the Broad Institute in Cambridge’s Kendall Square. It’s an independent, nonprofit partnership of Massachusetts Institute of Technology, Harvard University and Harvard’s five teaching hospitals.
Institute founding director Eric Lander wants to begin using Ted Stanley’s money to catalog all the genetic variations that contribute to severe psychiatric disorders. He said the Broad Institute has already collected the DNA from 116,000 psychiatric patients.
“Once you have the specific genes,” Lander said, “you can then accelerate the biological study of how they function together in pathways. That’s the really important step, and that’s the key next step.”
In an article out this week in the journal Nature, Broad researchers helped find 108 sites in the human genome associated with the risk of developing schizophrenia. Lander said this sort of systematic research at a large scale is hard for scientists to do when they have to worry whether the next grant will come through.
“That’s what’s so exciting about this gift is a commitment to take on a disease in its real, full picture,” Lander said.
The former CEO who is funding the big new effort said a managed approach will do a better job of focusing on the customer: the patient.
“That’s not what happens in most medical research,” Ted Stanley said. “Nobody’s really in charge of making sure it helps families where brain dysfunction has ruined their lives.”
His son Jonathan Stanley is OK with his father shooting for the moon to try to treat mental illnesses.
“In a lot of rich families, a good chunk of this huge amount of money that’s going to Broad would have ended up in my bank account,” he said. “All I can say is, my family got it right.”
http://commonhealth.wbur.org/2014/07/mental-illness-gift

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