Venture philanthropy and the Quest For The Test™

About a year after their only child passed away from complications related to bipolar disorder, Chicago couple Joyce and Dusty Sang were on an airplane.

sang“Our flight attendant was wearing pins for various illnesses on his apron,” recalls Dusty, “so I handed him one of The Ryan Licht Sang Bipolar Foundation’s awareness pins and told him about our son, Ryan, who passed away in 2004 at the age of 24 from this insidious illness.” The pin was designed by Joyce in the shape of a black-and-white striped ribbon to represent the opposite poles of depression and mania associated with bipolar disorder.

“Clutching the pin, the flight attendant kneeled down close to me and his hands began to shake,” recalls Dusty. “With tears in his eyes, he poured out his story of living with a mother who had bipolar disorder. We see over and over again the power of awareness: not only of a symbol like the foundation’s pin, but also of the safety that comes with being part of a community that understands. This safety unlocks stories that have been hidden away, sometimes for a lifetime.”

Since the founding of The Ryan Licht Sang Bipolar Foundation in the fall of 2004, Joyce and Dusty Sang have been on a quest “to change the course of early-onset bipolar disorder so that other families do not have to be us,” says Joyce Sang, president of the foundation. “Everything the foundation does is dedicated to the twin goals of catalyzing research that will achieve an empirical, biomarker test for bipolar disorder – the Quest for the TestTM – and promoting awareness, education and understanding.”

Annual Pediatric Bipolar Disorder Conference
In March 2011, the foundation sponsored the MGH/Ryan Licht Sang Bipolar Foundation Pediatric Bipolar Disorder Conference in Boston for the fourth consecutive year. Previously, the annual conference was sponsored by the National Institute of Mental Health. “When government funding ended, the Sangs literally saved the day, allowing the conference to continue annually as a vital forum for communication among researchers who are working in this critical area of research,” says Joseph Biederman, MD, director of the MGH Clinical and Research Program in Pediatric Psychopharmacology and Adult ADHD.

More than 100 researchers and other health care professionals attended the March 2011 conference. Participants came from throughout the United States as well as from Spain, Italy, the UK, Brussels, Colombia and Israel to share research and arrange future collaborations across multinational and multi-university platforms. “I have been attending the conference for the past four years,” reports Aditya Narain Sharma, MD, senior lecturer in Child and Adolescent Psychiatry at Newcastle University in the UK, “and I believe that the conference’s unique networking and collaboration opportunities will move us a step closer to solving the puzzle of bipolar disorder.”

... A community that understands

“We see over and over again the power of awareness: not only of a symbol like the foundation’s pin, but also of the safety that comes with being part of a community that understands.”
— Dusty Sang

By supporting the annual Mass General conference, where scientists and researchers can leverage their knowledge and ideas, the Sangs hope to catalyze progress toward the foundation’s quest to discover a biomarker test for bipolar disorder. This, combined with the foundation’s support of pilot novel scientific investigations, represents a new wave of venture philanthropy that is now the frontline of early funding in the field of bipolar disorder as government funding becomes less available.

Prevalence of Childhood Bipolar Disorder
When Ryan was young, diagnoses of early-onset bipolar disorder were relatively rare, according to Janet Wozniak, MD, director of the MGH Pediatric Bipolar Disorder Clinical and Research Program and associate professor of Psychiatry at Harvard Medical School. Wozniak and her colleagues were the first in the world to publish research suggesting that early-onset bipolar disorder was far more common than anyone had thought: They found that the disorder appeared in 16 percent of children under age 12 who were referred to the MGH program. A subsequent study of a non-psychiatrically referred population (Merikangas, et al: 2010) found bipolar disorder in 2.9 percent of more than 10,000 randomly selected adolescents throughout the United States.

The 2.9 percent figure is almost three times the prevalence of childhood autism (1 percent) and is comparable to the prevalence of bipolar disorder in adults (2.6 percent). “Until our research began to suggest that early-onset bipolar disorder was a common reason for psychiatric referral among children, it was not even taught in psychiatry residency programs,” says Wozniak. “When we met the Sangs and heard about Ryan’s story, we realized that he represented so much of what we were learning about this disorder in children.”

In Ryan’s Memory
“Ryan was a charismatic, creative, intelligent child with a wonderful smile that drew you in,” says Joyce. “When his symptoms started at age 5 and progressed as he grew older, no one could tell us what was wrong.” Ryan’s mood swings and fears grew more intense as he became a teenager, and he was hospitalized twice. With the help of medications, his condition seemed to go into remission by his early twenties. He was working in the family business, finishing a novel, writing music, and he became engaged to be married. “What we didn’t know is that he was feeling so well that he stopped taking his medication, which is a common occurrence ribbonamong people with bipolar disorder,” says Joyce. “He was like a computer without a surge protector; he hadn’t slept in days, he entered a manic episode, and in order to sleep, he turned to a street drug, which tragically proved deadly for him.”

Remembering back to when they lost their son, Joyce says, “We could have just stayed home in grief and never come out, but instead we decided to do what we could to help other families not be us.” Adds Dusty, “When you lose a child, it is not like having the flu. You are not supposed to recover. The hole in your heart never heals. We hope that what we are doing will make a difference for those children and their families who struggle everyday with this insidious illness.”

The bipolar awareness ribbon, designed by Joyce Sang, is the symbol for The Ryan Licht Sang Bipolar Foundation.  The black and white colors represent the opposite poles of depression and mania associated with bipolar disorder.


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