Action Council

Julie Renner is a physician assistant, currently working in pediatric hospital and behavioral medicine. She has a degree in Neuroscience and worked as a clinical research coordinator at the University of Pittsburgh Department of Physical Medicine & Rehabilitation prior to pursuing her physician assistant degree. She resides in central Ohio with her husband and three children. Her youngest, Sophia, lives with Angelman syndrome.

Terry Jo Vetters Bichell worked primarily as a public health nurse-midwife until her youngest child, Lou, was diagnosed with Angelman syndrome in 2000. She quickly switched focus to move bench research into the first clinical trials for Angelman syndrome and to help design natural history studies. Dr. Bichell earned a PhD in neuroscience from Vanderbilt University in 2016, studying gene-environment interactions in Huntington’s disease rodent models. She was the founding director of the A-BOM Alliance from 2016-2018. In 2019, Dr. Bichell launched COMBINEDBrain, a pre-competitive consortium of patient advocacy organizations, working to identify outcome measures and biomarkers for rare genetic neurodevelopmental disorders. She is the Vice Chair of the Tennessee Rare Disease Advisory Council and teaches a course in Translational Neuroscience at Vanderbilt University. As a parent, Terry Jo has been alongside her son Lou many times, as he has participated in clinical trials in the search for a treatment for Angelman syndrome.

Easton Bryant is a pharmacist, independent pharmacy owner, and consultant. He holds a doctor of pharmacy degree from Samford University and works closely with patients within the scope of natural medicine.  He resides in Kentucky his wife and four children. His oldest, Izzie Mae, lives with Angelman syndrome.

I am a research assistant professor in the Biological Chemistry department at the University of Michigan. I did my Ph.D. at Michigan followed by postdoctoral training at Yale and the UT Health Science Center at San Antonio before coming to Michigan. I live in Ypsilanti, Michigan with my wife Margaret who is a social worker. I have one daughter who is just finishing high school.

Sue is the grandmother of William Edberg, age 7 who lives with Angelman Syndrome, she is currently the doting grandmother to four children and resides in West St. Paul, Minnesota with her husband Jim. Before retiring she worked in several large corporations in Marketing, and Operations. Sue enjoys travel, golf, reading and raising money and awareness for a cure for Angelman syndrome.

Tami is the mother of Ethan, an adult living with Angelman syndrome. Ethan is deletion positive and was diagnosed in 2002 at the age of 2. Tami was a single teenaged mother, navigating through college to eventually earn her bachelor's degree in education from Indiana University, her master's in education from Indiana Wesleyan University, and her PhD in Leadership and Policy from Purdue University. Tami is married to Bryan (2017) and transitioned from public school administration to become the President / CEO of a successful non-profit in northern Indiana.  She continues to help families of those with special needs navigating the education system to develop IEPs and make the best of their child’s educational experiences.

Joe is a physician at Cooper University Hospital and an Associate Professor at Cooper Medical School of Rowan University, specializing in Emergency Medicine, Medical Toxicology, and Addiction Medicine. He and his wife, Linda, reside in Philadelphia, PA, with their two children—daughter Madelyn, and son Gabriel, who lives with Angelman syndrome (UPD) and was diagnosed in 2018, shortly before the age of two.

Former physician for the US Air Force. Been practicing internal medicine in Oklahoma for the past 15 years.

Laura Sargent’s education prepared her for a career in healthcare as a pediatric nurse practitioner in the NICU follow-up clinic/developmental health. This education was incredibly helpful as her daughter, Maddie, was diagnosed with Angelman syndrome in 2020. Following Maddie’s diagnosis and the loss of her father to cancer, Laura now divides her time between her family’s real estate and investment firm and Maddie’s Mission Foundation. Maddie’s Mission Foundation was established in 2022 to raise awareness and funding for individuals living with rare diseases and different needs. Laura and her husband, Patrick, are parents to twin girls, Maddie, and Kellie (6yo), and Colin (8yo). In her free time, she enjoys traveling, watching her children play sports, Friday night movie night with her family, all KC sports, and helping to find a care for Angelman syndrome.

Xiaowei holds a Ph.D. in experimental medicine from McGill University and a J.D. from Suffolk Law School. She also completed a three-year postdoctoral fellowship at Boston Children's Hospital . She then made a career change from science to intellectual property law. She was a patent analyst with IPSEN Bioscience, supporting intellectual property due diligence for acquisitions and licensing matters. Currently, she is working at WilmerHale, a law firm in the Boston area, where she focuses her practice on IP litigation, counseling, and patent prosecution. She is also a registered patent attorney before the U.S. patent office. Her daughter Raye lives with Angelman Syndrome.

Johnna Webb has over 15 years of accounting and finance experience in both public and private accounting. She was part of the first class for Kentucky’s Partners in Policy Making. She resides with her husband, Derrick, and their three children. Their daughter, Harper, lives with Angelman syndrome.

Todd Werner is a co-founding attorney of Avantech Law, an intellectual property law firm. With a degree in biochemistry, Todd has spent decades representing clients in the pharmaceutical industry. His son, Louie, lives with Angelman syndrome, and his wife Karly, serves on the board of FAST. After receiving Louie’s diagnosis, Todd immediately found hope through the FAST community, and has been raising funds through an annual charity golf tournament (Links for Louie) and doing whatever he can to support the mission.