WHO WE ARE
The Angelman Biomarkers and Outcome Measures Alliance (the A-BOM) is an alliance formed by both the Foundation for Angelman Syndrome Therapeutics and the Angelman Syndrome Foundation, together with researchers and pharmaceutical corporations to help move new treatments to the clinical trial phase. There are many medications and treatments for Angelman syndrome that are coming close to being ready for clinical trials. We need rigorous ways to measure if these treatments improve the quality of life for patients and families. Our alliance members work together to share in data, research, trial design, and stories to help people with Angelman syndrome.
BIOMARKERS vs. OUTCOME MEASURES
A Biomarker is something that can be measured and quantified as a result of biological tests such as EEGs, CT scans, and blood samples. Biological markers may be used for diagnosis or assessing a disease.
For more information, check out Washington Post’s excellent explanation: What Is A Biomarker?
An Outcome measure is the result of a test that is done to understand how a patient is doing before a treatment, and then the test is done again to understand if the patient is doing better or worse after a treatment. For example, a survey of parents to ask about their children’s behavior might give a baseline score about aggressive behaviors. Then, after a treatment, the survey is given again to see if the score changed. They are used to measure progress based on a desired goal or end point. Outcome measures may be measured with biological tests, but they are not used for diagnosis. Rather, outcome measures are based on desired results. Tests for outcome measure may be performed at the beginning of a study to establish a baseline, and then the same test or tests will be performed throughout a study to measure progress.
The A-BOM Alliance is sponsored and supported by the following foundations:
OTHER RELATED ORGANIZATIONS
MEET OUR TEAM
The A-BOM Team
Terry Jo V. Bichell, MPH, Ph.D
About Terry Jo
Prior to her son’s diagnosis, Dr. Bichell had earned a masters in public health as well as a certificate in nurse-midwifery from Boston University, where she was a Maternal and Child Health Leadership Scholar, and worked as a nurse-midwife in San Diego, and scientific advisor to the CASA Midwifery School in San Miguel de Allende, Mexico. Dr. Bichell has a B.A. from Johns Hopkins University and a bachelors in nursing from St. Louis University.
Dr. Bichell, her husband, Dr. David Bichell, and their son, Lou, reside on a small horse farm in Nashville, TN. Their four adult daughters, Dr. Beth Hochman, Rae Ellen Bichell, Lena Bichell, and Rosa Bichell visit often, in person or on face-time.
The Steering Committee
Dan has more than 20 years of experience in drug discovery research both in academia and the pharmaceutical industry. He became involved with the ASF after his son, Matthew, was diagnosed with Angelman syndrome in 1996. From 1997 to 2001, Dan was a member on the ASF Board of Directors and served as vice president from 1997 to 1999. From 1999 to 2003, he chaired the ASF Scientific Advisory Committee.
Dan is the chief operating officer of Dart NeuroScience LLC, a pharmaceutical company focused on the discovery and development of innovative drugs with new mechanisms of action for the treatment of learning and memory disorders. He previously held various senior management positions at other biomedical research companies including Discovery Partners International, BioFocus DPI, a Galapagos Company, and ChemVentures.
Dan earned a B.A. in Chemistry from the University of California, Santa Barbara and he holds a Ph.D. in synthetic organic chemistry from Yale University and was previously a member of the faculty of the University of California, San Diego. During his academic career, he was a Kent Graduate Fellow, an American Cancer Society Junior Faculty Research Fellow and an Alfred P. Sloan Research Fellow.
Dan resides in San Diego, California with his wife, Karen, and has three children, Michelle, Jay and Matthew.