Health

Removing the Stigmas of Mental Illness

Cure Alliance is the only advocacy group promoting national research on mental illness

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If you’re alive you probably know someone who has suffered - in secret or out in the open - from mental illness. Maybe it was your spouse, your dad or a sibling. The personal costs of mental illness can be devastating to patients and their families - just ask anyone trying to part the clouds during a deep depression. The public health costs for mental disorders are just as burdensome, yet research funding lags far behind other serious illnesses.

My friends and fellow East Siders Hakon Heimer and his wife, Alden Bumstead, want to change that. Over the last several years, they’ve been quietly organizing a national group to bring new hope to people who sometimes feel like their lives are spinning out of control. Hakon is co-founder of Cure Alliance for Mental Illness, the only advocacy organization dedicated solely to promoting national research on mental illness.

Hakon and Alden and local volunteers, including East Side advertising legend Tom Monahan and Matt Kaplan of PeaceLove Studios, are launching campaigns to raise awareness. Maybe you’ve seen their stickers on a car - Cure BP (bipolar disorder), Cure DP (depression) or Cure SZ (schizophrenia). Or maybe you got an email asking to sign their petition calling on President Obama to give mental illness more research focus. “We want to build this organization from the East Side out,’’ Hakon says.

What better way to get the attention of politicians than to show that mental illness is expensive, with lost earnings, medical care costs and disability benefits estimated at $325 billion a year. No one knows the price tag for the hidden costs: drug abuse, imprisonment and the stress on caregivers.

One of Cure Alliance’s goals is to educate people that mental illnesses are brain disorders just as much as Alzheimer’s or Parkinson’s, but that we still know very little about how our brains work or malfunction. Unfortunately, Hakon says our culture still fears, avoids and blames mental illness patients, who usually do not advocate for themselves.

Hakon is helping to fix this, and he is superbly qualified to do so. With a background in neuroscience and journalism, he works daily with some of the top neuroscientists and mental illness researchers in the world from his home office on Lloyd Avenue. He founded the Schizophrenia Research Forum website and also organizes meetings for Cold Spring Harbor Laboratory on Long Island. There he works with Nobel Prize winner James D. Watson, who discovered the structure of DNA and is married to Providence native Elizabeth Lewis Watson, whose father, internist Dr. Robert Lewis, had a practice on the East Side for decades. And last year, Hakon was named a member of the National Advisory Mental Health Council.

Most important, he has personal experience with mental illness. His brother, Gosta, was diagnosed with schizophrenia when he was 17. “He was a good student, an athlete and a popular kid,’’ says Hakon. “One day, he just fell off a cliff into delusions and hallucinations.’’ He left high school, lost friends and spent a decade in psychiatric hospitals. Medication has helped some of his symptoms, but his life has been severely curtailed. Like many people with mental illness, existing treatments have not enabled him to hold a job or live independently.

“At first, I wanted to find a cure for Gosta but then realized I was a writer, not a scientist,’’ says Hakon. “So I turned to science editing and ultimately advocacy.’’

The other co-founder of Cure Alliance is Robin Cunningham, of Pennington, NJ, a retired corporate executive who developed schizophrenia at age 13. Robin managed to finish college with honors, always hiding his symptoms, until he found a medication that worked. When he retired after a long career with Fortune 500 companies he went public with his illness, writing the first widely read blog by a person with schizophrenia.

Robin called Hakon out of the blue one day and a friendship was born. Now they’re working together to change the world for some of the most vulnerable people in it. To get involved, you can call Hakon at 369-4017 or visit curealliance.org. “This is fun and rewarding,’’ says Hakon. “We want to do it with our friends and neighbors.’’