RASopathies Network
President
Beth Stronach has been an academic research scientist for over a dozen years. After receiving a Ph.D. in Biology from the University of Utah in 1997 and pursuing postdoctoral work in Genetics at Harvard Medical School, Beth moved to Pittsburgh in 2002.
Since then, she has been a faculty member at the University of Pittsburgh, first in the Dept. of Biological Sciences, then in the Microbiology and Molecular Genetics Dept. at the School of Medicine. Her research focused on understanding how cells organize into complex tissues during organism development. Currently, Beth is a scientist administrator at the University of Pittsburgh Office of Research for the Health Sciences focusing on grant writing, reviewing, and editing. Beth is excited to bring these experiences to support the mission of RASopathies Network.
Beth’s son was diagnosed with Noonan syndrome (PTPN11) in 2007. His diagnosis validated for her the importance of basic research science to understand the molecular underpinnings of complex diseases.
Secretary
Lisa Schoyer is the mom of Quin Johnson, who had Costello syndrome (HRAS G12S) and died in 2002 at 6-1/2 years old, of embryonal rhabdomyosarcoma (eRMS) related to the syndrome. She is founder and President of the RASopathies Network USA.
Lisa also is a trustee of the International Costello Syndrome Support Group (ICSSG), as well as Past President and Past Secretary for the American Costello Syndrome Family Network (CSFN).
In 2007, Lisa partnered with Katherine A. Rauen, MD, PhD to produce the 1st International Costello Syndrome Symposium in Portland, OR; and the 2009 Scientific meeting on the genetic syndromes of the Ras/MAPK pathway: From bedside to bench and back, in Berkeley, CA. In 2011, she partnered with Bruce Gelb, MD, to produce the 2nd International meeting on genetic syndromes of the Ras/MAPK Pathway: Finding our way back to the bedside. In 2013, Lisa worked with Bruce Korf, MD, PhD, on the 3rd International meeting on genetic syndromes of the Ras/MAPK Pathway: Towards a therapeutic approach, in Orlando, Florida. Starting with the 2015 4th International RASopathies Symposium, Lisa has taken on the role of Principal Investigator for the biennial symposia.
Though trained as a professor of studio art, after Quin died, she was hired by the County of Los Angeles first as Chief of Family Support at the Los Angeles County Department of Public Health’s program for children with special healthcare needs (2003-2009). Since then, she has been working in the County’s Department of Mental Health in the Prevention Bureau/Family and Community Partnerships Unit where she is DMH’s Countywide Regional Center (for Developmental Disabilities) Liaisons Coordinator, where her passion is helping mental health clinicians provide appropriate mental health services for those with I/DD.
Treasurer
Kim Connor lived most of her life in the Sacramento and San Francisco areas of California. She currently lives with her husband Robbie Holland in Davis, California. They are parents to three grown daughters. Their oldest daughter, Rachel (41 years), has CFC syndrome and lives and works nearby – enjoying their college town full of lots of students and activities. She earned a bachelor’s degree in Economics from UC Berkeley in 1976 followed by nearly 38 years of education budget and policy work with the California state government. For eleven years prior to retirement, Kim worked as a Budget Consultant for the California Legislature, Senate Budget Committee, handling K-12 education budgets. With retirement, she is thrilled to have more time with family, reconnect with friends and enjoy walks within view of the nearby Coastal Range mountains. She remains committed to disability issues and enjoys volunteer work with the amazing local Team Davis organization and with the Community Advisory Committee for the Center for Excellence in Developmental Disabilities at the UC Davis MIND Institute. Impressed and grateful for the work of the RASopathies Network, it is her hope that she can contribute in some way to this very important work.
Board Members At-Large
Andrea Cote is mom to a son with Noonan Syndrome (SOS1). Prior to becoming a mom Andrea worked as a pediatric oncology nurse coordinating experimental therapeutics. She worked specifically in the early clinical trails of MEK Inhibitors for LGG and NF1, and has presented internationally on managing drug side effects. Andrea currently works in early intervention, and supports infants/young children with pediatric feeding challenges, G Tube feeding, and developmental support.
Cara Borian is the mother of Leah Borian who was diagnosed with CFC Syndrome (BRAF mutation) at seven months old in 2010. Leah’s diagnosis triggered an interest in learning as much as possible about the RASopathies. Cara has been a volunteer with CFC International since 2012 most recently serving on their Board of Directors from 2015-2021.
Cara graduated from Texas A&M University with a B.S. in Chemical Engineering. After leaving the field in 2000 to stay home and raise her three children, she returned to the workforce in 2015 and is currently a systems integrator for Agility Communications Group which is a telecommunications company.
Erin Gibson is mother to a daughter with RASA-1-related disorder, a genetic disorder that causes complex CM-AVMs, who was diagnosed at birth in 2016. Erin is a also neuroscientist and Assistant Professor at Stanford University School of Medicine. She earned her PhD in Behavioral Neuroscience at the University of California, Berkeley studying the role of the circadian system in homeostatic processes, including neuroendocrine, immune and neural stem cell regulation. As a postdoctoral scholar at Stanford University, Erin studied the effect of neuronal activity on myelin microstructure in health and disease. The Gibson lab focuses on understanding how glial cells modulate neural circuits throughout development and degeneration, with a focus on the intersection between sleep/circadian and glial biology in disorders such as autism spectrum disorders, cancer therapy-induced neurotoxicity, multiple sclerosis, and Alzheimer’s disease. She has also collaborated with collogues at Stanford to develop the first RASA1-related iPSC line from her daughter which they are studying in the hopes of gaining novel mechanistic insights into the subsequent CM-AVMs associated with the disorder.
Jenna Gay has two sons who have Noonan Syndrome (RAF1). She has held a biennial fundraiser for the Noonan Syndrome Foundation in Madison, Wisconsin, since 2017 to help offset the foundation’s conference expenses. Jenna holds a Bachelor of Science in biology and works as a Director of Quality in the stem cell and regenerative medicine field. Jenna is specifically interested in making additional disease model stem cell lines related to RASopathies available to researchers.
Lee Johnson is the dad of Quin (Costello syndrome, HRAS G12S) and is Lisa Schoyer’s spouse.
Lee conducts and manages R&D in physical science and technology, with more than 30 years’ experience at non-profit organizations. While not a medical researcher, his familiarity with the research environment and non-profits are applicable and useful to the RASopathies organization.
Patrick Rooney, a dedicated advocate for Noonan syndrome research and support, brings a unique blend of experiences to the Rasopathies Network board. Holding a B.A. in Political Science from the University of Nevada, Las Vegas, Patrick has served in the United States Army in Frankfurt, Germany, worked on the legislative staff of United States Senator Richard Bryan, founded the wine news website Wine Industry News, co-created the wine data research firm Wine Angels, and served on the writing staff of Jimmy Kimmel Live! Motivated by his son’s Noonan syndrome diagnosis, Patrick is passionate about advancing research and awareness efforts. He is currently developing the Noonan Syndrome Network, an online resource hub for affected individuals and families. Patrick’s diverse professional background and personal commitment make him a valuable asset to the Rasopathies Network’s mission.
RASopathies Network UK
Founder and Director
Colin Stone is the father of Helaina Stone, who has Costello syndrome. In 1995, he set up the international Costello syndrome listserv at a time when the cases of no more than 20 children with Costello syndrome were published. Colin’s listserv continues today, with over 150 families signed on.
Colin’s UK Charity, International Costello Syndrome Support Group (ICSSG), has been the first and crucial funder for the international Costello syndrome and all the International RASopathy symposia. Without ICSSG’s seed money, confidence in convening the meetings during the era of sustained recession, would have flagged.
Colin and ICSSG have been instrumental in bringing attention to the RASopathies in the UK. With the support of Patron Aaron Ward-Atherton, Lord of Little Witley & Hurcott and the Genetic Alliance, UK, RASopathies Network UK launched at the House of Lords in September, 2010. Colin and his wife, Cath, have worked to support Dr. Bronwynn Kerr and Dr. Sue Huson to educate pediatricians across the country.
Photo Credits for Home Slider Images:
Anahita Avalos
Rick Guidotti, Positive Exposure
Melissa Harwood-Muir of Melissa Ann Photography
