Lisa Schoyer is the mom of Quin Johnson, who had Costello syndrome (G12S) and died in 2002 at 6-1/5 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).
Lisa partnered with Katherine A. Rauen, MD, PhD to produce the 1st International Costello Syndrome Symposium in Portland, OR, 2007; 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. For the 2015 4th International RASoapthies Symposium, and the 2017 5th International RASopathies Symposium, Lisa was the Principal Investigator.
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 needs (2003-2009), and currently for the County’s Department of Mental Health in the Prevention Bureau/Family and Community Partnerships Unit
Lisa Schill is the mother of Maxwell, who has Noonan Syndrome (PTPN11). She is the Vice President of the RASopathies Network USA.
She is a member of Rare New Jersey, a working group dedicated to raising awareness of rare diseases in New Jersey. She is also an Advocacy Advisor and Co-chair of the Support Committee for Global Genes.
She graduated Magna Cum Laude from the University of North Carolina Greensboro with a dual major in Biology and Exercise and Sport Science. She was president of the Tri Beta Biological Honor Society.
When not volunteering or spending time with her family, Lisa enjoys competing in triathlons.
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 has focused on understanding how cells organize into complex tissues during organism development.
Ironically, the subject of Beth’s research is a signaling pathway closely related to the RAS pathway, so it was quite a shock to learn of her son’s diagnosis of Noonan syndrome (PTPN11) in 2007. Yet, his diagnosis validated for her the importance of basic research science to understand the molecular underpinnings of complex diseases.
More recently, Beth has been focusing her time on volunteer and advocacy work to raise awareness for rare disease research and legislation. Beth is also the Program Committee Chair of the Pittsburgh Chapter of Women in Bio (WIB). In this role, she organizes events to empower and support women’s professional development in the life sciences space. Beth is excited to bring these experiences to support the mission of RASopathies Network.
Lee Johnson is the dad of Quin Johnson and Lisa Schoyer’s spouse.
Board Member At-Large
Elisabeth Parker is the mother of Ezra, who has Noonan Syndrome (PTPN11).
She graduated Magna Cum Laude from Oregon State University with a B.S. in Liberal Studies and an emphasis in Sociology and Anthropology. She is a yoga practitioner and instructor for both kids and adults. She also spent some time studying graphic design and uses those skills marketing for the yoga studio where she teaches and for various other professional and volunteer projects.
Elisabeth’s favorite role is being a wife and mom of two boys. She chronicles her family’s journey with Noonan syndrome on her blog and Instagram. As a RASNet board member, she is excited about continuing to educate and advocate for the RASopathies through the use of social media.
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 three 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.
Rick Guidotti, Positive Exposure
Melissa Harwood-Muir of Melissa Ann Photography