About Us

RASopathies Network

 

President

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).

Lisa partnered with Katherine A. Rauen, MD, PhD to produce the 1st International Costello Syndrome Symposium in Portland, OR, 2007; and the 200

9 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 RASoapathies 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 where her passion is helping mental health clinicians provide appropriate mental health services for those with I/DD.

 

Vice President

Lisa Schill is a passionate Patient Advocacy Engagement Consultant. She has over ten years of experience in the rare disease community.  From personal experience raising an individual with a RASopathy, and working with non-profit organizations, industry, and government agencies, Lisa provides organizations with broad, experiential insight and direction. From 2015 forward, she has provided leadership and strategic guidance for the top rare disease advocacy organizations to tackle patient access challenges. She has expanded and refined advocacy educational programs, created collaborative learning opportunities, managed major rare disease events, and influenced legislation – all to accelerate treatment options and improve the lives of patients and families.

As the Vice President of the RASopathies Network, Lisa is dedicated to improving outcomes for families living with a RASopathy. She has helped grow the organization since 2013.


Secretary

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.


Treasurer

Bruce Deckman is the dad of Collin Deckman, who has Costello Syndrome (G12S).  He has participated in 11 Costello Syndrome family conferences in the United States and UK since 2001.

Bruce graduated Magna Cum Laude from Alfred University (1978) with a B.S. in Ceramic Engineering, including a thesis on the use of calcium hydroxyapatite as a bone implant material. He later earned an MBA from the University of Vermont (1981), with majors in Finance and Marketing. During that time, he became the first visiting student at the Tuck School of Business at Dartmouth College. After 40 years of work in industry and consulting, he retired as President (2020) of SAI Industrial LLC, an international business consulting firm that undertakes market research and analysis for multibillion-dollar companies in the chemicals, materials, medical, equipment and allied industries globally.

When not volunteering or spending time with his family and six grandchildren, Bruce enjoys golfing, visiting national parks, working in the yard, and cheering on the Philadelphia Eagles and Phillies.


Board Members At-Large

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.

 

 

Elisabeth Parker is the mom of Judah and 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 instructor and advocate who is passionate about creative fundraising, volunteering, speaking and teaching yoga at RASopathies and Rare Disease events.

Elisabeth’s family resides in the Willamette Valley in the beautiful Pacific Northwest. They love bike rides, SUP, legos, local eats, home improvement, Oregon State University athletics, travelingand hosting friends and family. Elisabeth chronicles her family’s journey with Noonan syndrome on her blog and Instagram, and as a RASNet board member, she is always working to better educate, advocate, and fundraise for RASopathies research through 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 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