Ryan Licht Sang, a brilliant young musician, writer, and artist, passed away on August 26, 2004 at the age of 24. Ryan was diagnosed with early-onset Bipolar Disorder in his early teens. Although not understood at the time, his sleeplessness and night terrors from the age of five were sending signals of the beginnings of Bipolar Disorder. What was not available to Ryan’s parents in those days was a test for Bipolar Disorder that could guide them in helping their son and ultimately in saving his life. And, today, the same is still true for those parents whose children are exhibiting behavioral symptoms caused by mechanisms in their brains that are not yet understood.
If a child has a bacterial infection, a pediatrician can do a culture and determine scientifically what biological organism is present and what antibiotic will make it go away. If a child has diabetes, a simple blood test reveals an empirically-based diagnosis so that a well-researched treatment plan can be brought into action. If a child has cancer, a battery of scans from MRI to PET and tests from biopsies to blood can guide physicians to specific and definite conclusions from which therapies like chemo to radiation to pharmaceuticals can be prescribed. Knowing a diagnosis and the particulars about an illness may be heart-wrenching, but often with that knowledge comes strategies and treatment plans.
The Ryan Licht Sang Bipolar Foundation site
Today, however, there are no empirical, biomarker tests that boil down the symptoms of any mental illness into a clear and firm diagnosis. There are no blood tests, no DNA tests, no MRI tests - there are no simple and certain empirical tests that either identify or even predict what is wrong. The complexity of mental illness and the lack of knowledge of the genes, proteins, and other factors at work have prevented scientists from discovering clear biomarkers that identify specific mental illnesses like Bipolar Disorder.
Consequently, the tools physicians, psychiatrists, and psychologists have to identify mental illnesses are really blunt instruments based on clinical observations, questionnaires, and patient histories. From these, behaviors are then categorized according to definitions in the DSM-IV - the Diagnostic and Statistical Manual of Mental Disorders - and conclusions are reached from which diagnoses are made. Derived from the work of Brigadier General William C. Menninger in 1943 to classify mental illnesses in the military during World War II, the DSM was first published in 1952. From there, revisions occurred in 1968, 1980, 1987, 1994, 2000, and the DSM-V is due to be released in 2013. Although the explosion of scientific tools and techniques during these nearly seven decades has been remarkable - from the discovery of the double helix of DNA by Watson and Crick to the mapping of the Human Genome to the invention of computers and programs that can analyze data at previously unimagined speed - we are still far from clearly identifying the wiring of the brain and explaining why it sometimes goes awry.
Ryan Licht Sang
To the optimist, the brain is a great frontier. Unlocking its secrets, discovering its pathways, and understanding how and why it causes behaviors is a brave and exciting new world. However, this scientific promise offers little comfort if on Sunday night you are the parent of a child who is acting out, whose mood is cycling from exuberant to irritable to exuberant almost hourly, who is very bright, but at the same time almost paralyzed by emotional outbursts or dark thoughts so that homework assignments cannot be finished, or maybe that child was you.
We are told that things will change - the speed of that change, however, is critically important if you, a family member, or a friend is suffering with a brain disorder right now. And, that is where a family tragedy comes into play.
In October 2004, The Ryan Licht Sang Bipolar Foundation was founded in honor of Ryan so that other children and their families would not have to suffer the same outcome. In 2005, the Foundation established its “Quest For The TestTM” initiative to find an empirical, biomarker test for Bipolar Disorder and worked for the next two years to establish a Medical Committee, second to none, comprised of the best and the brightest scientists, researchers, and clinicians in the country. With an empirical test, early detection and intervention will be possible and the confusion, misdiagnosis, and stigma associated with Bipolar Disorder will significantly diminish.
Bipolar Awareness Ribbon
In pursuit of its Quest, the Foundation has made Grants and Awards during the past three years to: 1) the Massachusetts General Hospital (Harvard) to co-sponsor four successive Annual Pediatric Bipolar Disorder Conferences (2008, 2009, 2010, and 2011) attended by researchers, scientists, and clinicians from around the world; 2) the University of Chicago Department of Human Genetics (two annual grants) to support the bioinformatics and genetics research of Dr. T. Conrad Gilliam in search of a predictor of Bipolar Disorder; 3) the University of Pittsburgh Medical School to support the study of the genetic risk to children of parents with Bipolar Disorder; 4) the American Academy of Child and Adolescent Psychiatry (AACAP) to establish a “Quest For The TestTM” Pilot Research Award for a Young Investigator in Bipolar Disorder; 5) Dr. Harold Koplewicz of the Child Mind Institute and his team at the Nathan S. Kline Institute researching an early predictor of Bipolar Disorder through analysis of resting-state fMRIs; and, 6) the Johns Hopkins School of Medicine’s ADAP project (two annual grants) to educate high school students, their parents, and their teachers about Depression and Bipolar Disorder and to help reduce the stigma associated with these illnesses.
Stay Thirsty has selected The Ryan Licht Sang Bipolar Foundation as a Worthy Cause for so many reasons. Not only is our Manifesto based on Ryan’s philosophy to “stay thirsty” for art, for music, for writing, and for all endeavors of the creative mind, but also because his spirit and “force of nature” persona have motivated people all over the world to work together to make a difference in their lives and in the lives of others. To read more about Ryan and The Ryan Licht Sang Bipolar Foundation, please visit the Foundation’s website, and if you want to help, then join the Foundation’s Quest by making a donation, sharing your story of Bipolar Disorder, or emailing this article to a family member or friend. If everyone does his or her part to push the Quest ahead, the day will come when Bipolar Disorder is no longer a mysterious and elusive illness. The time to help is now so that another generation of young people does not have to suffer from this insidious disorder and we invite you to adopt The Ryan Licht Sang Bipolar Foundation today as your worthy cause, too.
