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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

BIOMARKERS

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?

OUTCOME MEASURES

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.

OUR PARTNERS

FOUNDATIONS 

The A-BOM Alliance is sponsored and supported by the following foundations:

CORPORATIONS 

OTHER RELATED ORGANIZATIONS

MEET OUR TEAM

The A-BOM Team

Terry Jo V. Bichell, MPH, Ph.D

Director/Scientific Officer

About Terry Jo
Terry Jo Vetters Bichell has been the Director/Scientific Officer of the A-BOM since its inception in 2016. Dr. Bichell earned a PhD in neuroscience from Vanderbilt University in 2016, studying gene-environment interactions in Huntington’s disease rodent models, but she has been involved in Angelman research since 2000, when her son, Lou, was diagnosed with Angelman syndrome.   After being inspired by Dr. Art Beaudet at the first international Angelman conference in Tampere, Finland in 2000, Dr. Bichell worked with scientists and clinicians to move bench research into clinical trials.  She was on the team of investigators who launched the first Angelman clinical trial (Folic acid in 2001), the NIH-funded Natural History trials, and the Levodopa trial. She has also published studies on Angelman rodent models concerning Gabrb3 mutation, Ube3a gene expression and circadian rhythms. In addition, Dr. Bichell originated Alphabet Therapy, a method to teach literacy skills to children with Angelman syndrome. She served on the Scientific Advisory Committee of the Angelman Syndrome Foundation from 2005-2008. During her doctoral studies, Dr. Bichell was awarded the HDBuzz prize for young science writers and the Student Leadership Award.

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.

Anna Arata

Administration 

About Anna
Anna Arata is administrative assistant and media manager for the A-BOM. Anna is a jazz singer based out of Nashville, TN. Originally from Framingham, MA, Anna grew up hearing music everywhere; from her Celtic musician father to community theater shows. In 2012, she went on to study vocal performance at Belmont University and graduated in May 2015. There, she met her fellow band mates and created the swing jazz band, Gnarly Parkers. Anna both performed and managed the band for three years until it disbanded in 2016. She not only developed a keen ear for swing, but also harnessed her abilities in the business world, including booking, accounting, media management, and band management. Since 2015, Anna also performs seasonally at the Grand Hotel on Mackinac Island as the lead singer of the Grand Hotel Orchestra and as a main performerCurrently, Anna is forming a new band, as well as composing original songs for her own projects, namely Anna Arata Music & The Anna Arata Vintet, in addition to working for the A-BOM.
Barbara O’Brien, Ph.D

Editor

About Barbara
Barbara O’Brien is a recent graduate of the Neuroscience doctoral program at Vanderbilt University, where she studied the genetics of sensory neuron development and morphology. She earned her bachelor of science degree in biology and psychology from the University of Washington in Seattle and has experience working in labs researching motor systems, sensory systems, and learning and memory in various animal models. She is passionate about communicating science and scientific studies to the general public, particularly to patients and families so they know about the latest research and scientific progress for diseases. She currently resides in Houston, TX, with her husband, who studies lung cancer genetics at The University of Texas Health Science Center, and her cats, who study bird and squirrel behavior at The Living Room Window.

The Steering Committee

Jodi Cook, Ph.D
Agilis Biotherapeutics
About Jodi
Dr. Cook, Ph.D. is the Chief Operating Officer for Agilis Biotherapeutics. She has more than 20 years of senior executive experience in the life-sciences industry ranging from advanced technology start-ups to a Fortune 500 corporation. Dr. Cook was on faculty at Arizona State University and the Mayo Medical School, and was the Director of the Hearing Aid Program at Mayo Clinic, Rochester, Minnesota. Most recently, as the CEO and founder of Thesia Medical LLC, she was affiliated with University of Pennsylvania’s UpStart program successfully working with life science inventors to develop business plans and go-to-market strategies. Previously, she was Vice President, Clinical Research and Professional Relations for InSound Medical, a venture-backed company sold for over $200 million. Among her experiences, Dr. Cook has been responsible for managing clinical research in the US, Europe, and Asia, and launching new products in the US and UK. She counts among her accomplishments the development and execution of sound clinical and regulatory strategy and leadership for corporate medical and professional affairs. Dr. Cook earned her Ph.D. in Auditory Science at Arizona State University, and completed a fellowship at Johns Hopkins School of Medicine.
Tim Bousum
ASF
About Tim
Tim Bousum and his wife, Maiya Dos, reside in Ipswich, MA, and are proud parents of two young boys, 11 year old Cooper and 7 year old Bode, who was diagnosed with AS in 2011.  Following Bode’s diagnosis, the family immediately engaged with the Angelman community to find the best care possible for Bode and all AS families.  Tim now serves as the Vice President of the Angelman Syndrome Foundation board of directors, and is treasurer of the Ipswich Special Education Parents Advisory Committee.  Tim works for AstraZeneca Pharmaceuticals and graduated from Lehigh University in 1994 with a degree in Biology.
Paula Evans
FAST
About Paula
Paula Evans earned her Bachelor of Science Degree in Architectural Technology from the New York Institute of Technology. Her career focused on residential and commercial property management in both Manhattan and Chicago. She oversaw the management and title transfer of multi-million dollar properties as well as handling all property negotiations, purchasing, staff supervision and construction/renovation projects. Her portfolio contained some of the highest profile buildings and entities in the above mentioned cities.Paula has two children; her daughter Ainsley has Angelman Syndrome.
Dan Harvey, Ph.D
ASF
About Dan
Dan Harvey was appointed to the ASF Board of Directors in 2012 and previously served as chair the ASF Scientific Advisory 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.

Allyson Berent, DVM
FAST
About Allyson
Allyson Berent is a veterinarian in New York City. She received her Bachelor of Science and Doctor of Veterinary Medicine (DVM) degree from Cornell University. She is a member of the American College of Veterinary Internal Medicine and is a specialist in Internal Medicine and Interventional Radiology/Interventional Endoscopy. She currently holds a position as the Director of Interventional Endoscopy at one of the largest specialty animal hospitals in the world in New York City.  She has spend the last 10 years doing clinical research and running various clinical trials for novel therapeutics and medical device development in dogs and cats. Allyson is currently the Chief Science Officer of the Foundation for Angelman Syndrome Therapeutics (FAST).
 

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