Aaron J Harding, MS is a retired naval officer and clinical laboratory scientist professional with a son diagnosed with SynGAP1 Syndrome in 2013. He and his wife, Monica, additionally have two daughters and reside in San Diego, CA. He received his masters from George Washington University in immunohematology. An active leader within the SynGAP1 community since 2014, he served in several positions within Bridge the Gap - SYNGAP1 ERF, including co-lead of the NORD/FDA SYNGAP1 Data Registry. During his 29 years of naval service which includes deployments in U.S. Central Command, he has been awarded the Joint Defense Meritorious Service Medal (2), Navy Meritorious Service Medal (2), Joint Commendation Medal and Navy Commendation Medal (2). He has several publications in the Clinical Laboratory Sciences and Armed Services Blood Program.
Ashley Evans is a career investor, focused on private equity transactions in large technology businesses. She joined The Carlyle Group in 2006 and currently serves on the Boards of Directors of DiscoverOrg and Veritas. She received her MBA from Stanford’s Graduate School of Business, her MPhil from Cambridge, and her AB from Harvard College.
Ashley’s five-year-old son Tony was diagnosed with SynGAP-1 in 2018. Ashley and her husband Mike founded SRF to help Tony and others suffering from SynGAP-1 and related diseases.
Virginie McNamar is a project manager who graduated with a Master in International Business from France. She worked as a event and volunteer manager, product director for a volunteer management software company and township community outreach director.
Her youngest son was diagnosed with Syngap1 in November 2016 at 16 months old. Since then, she dedicated her free time to help raise awareness, build strong local communities and facilitate global collaboration. She started along with other Syngap parents Syngap Global Network, an international collaboration group.
Fil Randazzo is currently Founder and CEO Leverage Science. Leverage Science is currently helping investors and innovators identify big ideas and turn them to reality. Previously, Fil served as a Deputy Director at the Bill & Melinda Gates Foundation (BMGF). During his 12+ year tenure at BMGF, he actively participated in its rapid growth from a small startup to a 1500 employee institution. Fil co-launched and co-managed the Grand Challenges in Global Health Initiative, which in 2005 established the standard on how BMGF sources, funds and manages innovation. Fil directly managed a $600M investment portfolio which spanned areas such as health, agriculture, education, and policy. His portfolio included some of BMGF’s biggest success stories. From 1994-2004, Fil served a variety of scientific roles at the Chiron Corporation in Emeryville CA. He earned a Ph.D. in Molecular, Cellular and Development Biology at Indiana University, Bloomington and B.S. in Microbiology and Anthropology from the University of Notre Dame.
Hans trained in Internal Medicine and Infectious Diseases at Beth Israel Deaconess Medical Center and completed a Clinical Investigator Training Program with a Masters in Medical Sciences from Harvard/MIT Health Sciences and Technology. He is a parent to a son with SYNGAP1 deficiency and since March 2017, an advocate for advancing the care and research for this rare disease.
Laura Ma has a son who was diagnosed with SynGAP1 Syndrome in 2015. Prior to retiring, she was a Director at a management consulting firm. Her areas of specialty while in management consulting included strategy (corporate, marketing, distribution, IT), organizational design/implementation & effectiveness, information technology (strategy, platform/database design and implementation) and regulatory compliance. She received her bachelors from UCLA in Psychology with specializations and concentrations in Business & Administration, Computing, and Developmental Disabilities.
Since her son’s diagnosis, she has immersed herself in understanding his condition and advocates for his well-being, growth, education, and happiness. She credits her son for her tenacity and life perspective.