Action Council

Beth is the Internal Communications Lead for the Provider Solutions & Operations team at Cigna. She lives in Cleveland with her husband, Mike, and their two young daughters, Annabelle and Imogen. Imogen lives with Angelman Syndrome. Beth also serves as the Vice President of the Board of Directors at Connecting for Kids, a local organization that supports families with any concern about their child.

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.

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.

Samantha currently services as Project Manager for IT projects within UNHCR. In addition, she has experience in the pharmaceutical industry and volunteering in France for the Angelman syndrome community. She resides in Switzerland and her son, Pietro, lives with Angelman syndrome.

Sara Gainey is currently working as a Paralegal for Public Services Union while finishing up her Bachelor's of Law in Business. Her and her husband both volunteer at the German Angelman eV medical dept (Angel FOCUS). Sara is the mother of Kayleigh, who lives with Angelman syndrome and resides in German.

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.

Roy spent many years overseeing global product development of new technologies and running R&D teams. After retiring from full time employment, Roy worked as a consultant for a Japanese company aimed at expanding their global footprint. He resides in Ohio and is the grandfather of Imogen, who lives with Angelman syndrome.

Prior to staying home and homeschooling her four children, Emily Planton was a high school science teacher. With a Masters in Educational Technology and awards for classroom innovation, Emily specialized in creating relatable real-world material for all abilities and types of learners. Finding FAST has given our family hope, and been the catalyst for our fundraising efforts, Bike4Briar and Ski4Briar. Emily lives in Wisconsin with her husband (Craig) and four children- Rownan, Greer, Marek, and Briar, who lives with Angelman syndrome. Emily enjoys traveling, water-sports, nature and cooking.

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.

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.