image: SynGAP Research Fund logo
Credit: SynGAP Research Fund
Atlanta, GA – March 22, 2024 – SynGAP Research Fund 501(c)(3), the leading patient advocacy group working to improve the lives of SYNGAP1-Related Disorder (SRD) patients, today announced the appointment of John Hill, Eric Moulton, and Lindsay Wieczorek to its Board of Directors effective April 15, 2024. The incoming Directors will fill positions being vacated on April 14, 2024, by Victoria Arteaga, Melissa Foster, and Nancy Kessler.
“Again, SRF has filled all 15 seats on our Board with highly qualified SYNGAP1 relatives. Such a confluence of talent and passion is tantamount to SRF’s success as we strive to develop therapies and improve clinical care for patients suffering from SYNGAP1-Related Disorder,” says Suzanne Jones, MBA, SRF’s Board of Directors Chairperson.
The SRF community welcomes newcomers to its Board of Directors who are primed to add value to the organization, as well as shares a heartfelt thank you to our outgoing Directors whose service has left a mark and will be missed.
Incoming Board Members:
About John Hill
A recently retired SYNGAP1 grand uncle, John Hill is the former President and Chief Commercial Officer for Pilot Freight Services, a $1.7B corporation. With more than four decades of experience in the transportation and logistics industry, Mr. Hill brings a wealth of management and leadership expertise to the SRF Board. He is a member of multiple advisory boards, both past and present, including Hofstra Athletics and Alex’s Lemonade (childhood cancer research). Fittingly, Mr. Hill is already involved in SRF fundraising and hosting the fourth annual SRF Gala honoring Caren Leib. A graduate of Hofstra University with a BBA in Marketing Management, he resides in New Jersey and is delighted to share his vast knowledge with the SRF community.
About Eric Moulton
Eric Moulton resides in Washington, DC where he is a management and program analyst focused on strategic planning and business process improvement. He began his career consulting for clients in the federal sector before joining the US Department of Defense in 2017, where he currently serves as a Chief of Staff. Mr. Moulton is the father of two little girls, the youngest of whom was diagnosed with SYNGAP1 in early 2023. With his background in strategy and business operations and commitment to accelerating the research needed to find treatments for his daughter, Mr. Moulton is an excellent addition to the SRF leadership ranks. He received his BS in Foreign Service and MA in Security Studies from Georgetown University.
About Lindsay Wieczorek, PhD
Lindsay Wieczorek joins the Board as a mom to a Syngapian and as a scientist who recently resigned as the Senior Scientist and Co-Director of the Humoral Immunology Laboratory in the Department of Vaccine Development at the U.S. Military HIV Research Program. Dr. Wieczorek worked in infectious disease research for over 20 years, including 10 years designing and running experiments in the lab. Most recently, she supported the effort to study and develop protective measures against SARS-CoV-2. She was responsible for a $1.5M research portfolio consisting of multiple diverse project areas and collaborations. Dr. Wieczorek brings a wealth of experience in basic science, high-throughput screening, product development, and preclinical and clinical trials to SRF. She holds a PhD in Cellular and Microbial Biology from Catholic University, an MS in Biotechnology from Johns Hopkins University, and a BS in Molecular Biology from the University of Wisconsin at Madison. Dr. Wieczorek now resides in Minnesota with her family.
Outgoing Board Members:
About Victoria Arteaga, MBA
A SYNGAP1 mother, native of Colombia, and current resident of Florida, Victoria Arteaga has been and remains heavily involved in the SYNGAP1 realm. While stepping down from the SRF Board of Directors in an official capacity, Mrs. Arteaga will remain the SynGAP Research Fund’s Latin America Director. Co-founder of SHER (Sociedad Hispana de Enfermedades Raras), the Hispanic Society of Rare Diseases, she will also continue to advocate, raising awareness of rare diseases and improving access to resources for this underrepresented community. With a background as an international purchasing manager, product developer, and negotiator with suppliers for leading companies in Colombia and Latin America, Mrs. Arteaga is well-suited to continue championing Latin Americans with SYNGAP1. Mrs. Arteaga holds a Bachelor’s Degree in International Business, with a Major in Political Studies and Geopolitics from EAFIT University in Colombia, in addition to an MBA from Florida Atlantic University.
About Melissa Foster
Melissa Foster resides in Kansas and is invested in the development of clinical sites specializing in SYNGAP1 around the US. Her engagement will continue, as will her ongoing interest in SRF initiatives, once Mrs. Foster rolls off the Board. Armed with an undergraduate degree in Psychology from the University of Colorado at Boulder and a Masters in Elementary Education from Loyola University (Chicago), Mrs. Foster has spent years giving of herself to children, formerly as an elementary school teacher and most recently as a mother of three. When her middle child, and only daughter, was diagnosed with SYNGAP1 in 2021, Mrs. Foster channeled her energy to make the world a better place for those living with SYNGAP1.
About Nancy Kessler, MS
As sister to Caren, the oldest known living person with SYNGAP1, Nancy Kessler has a sixty-year history with SYNGAP1. Having retired from a thirty-five-year career as a teacher and case manager of special education students, Mrs. Kessler now acts as her sister’s co-guardian and will continue to immerse herself in SYNGAP1 advocacy and SRF causes. Despite leaving the Board, Mrs. Kessler is hosting the fourth annual SynGAP Research Fund Gala in New Jersey this year, assisting families with IEPs, and collaborating with other SRF volunteers on upcoming legislative initiatives. Mrs. Kessler holds an Educational Specialist Degree, Ed.S. in School and Community Psychology and most recently received a certificate in Applied Behavior Analysis.
SRF Board of Directors Responsibilities
SRF Directors are its key decision makers who address the organization’s mission, strategy, and goals. The Board’s governance covers the oversight for the organization, large-scale planning, and overall direction of the non-profit. The role of a Board generally includes legal and fiduciary responsibilities, Board meeting attendance, executive compensation decisions, and committee service.
About SYNGAP1-Related Disorder (SRD)
SYNGAP1-related disorder (ICD-10 F78.A1; ICD-11 LD90.Y) is a rare genetic disorder caused by variants on the SYNGAP1 gene that reduce SynGAP protein levels. SRF has identified over 1,300 patients to date, the number grows weekly. The SynGAP protein acts as a regulator in the synapses (where neurons communicate with each other). When these protein levels are too low, we see an increase in excitability in the synapses making it difficult for neurons to communicate effectively. This leads to many neurological issues seen in SynGAP patients. Other locations and functions of SynGAP protein are also under study.
Symptoms of SYNGAP1 include intellectual disability; epilepsy; hypotonia (low muscle tone); gross and fine motor skill delays; autism spectrum disorder; gastro-intestinal disorders; sleep and behavior disorders; visual abnormalities; and more.
About the SynGAP Research Fund (SRF)
The mission of the SynGAP Research Fund (SRF) is to improve the quality of life for SYNGAP1 patients through the research and development of treatments, therapies, and support systems.
SRF was founded in the US in 2018 as a 501(c)(3) US public charity, and families created sister organizations for SRF in the UK in 2020, in Europe (Netherlands) in 2022, and in Latin America (Colombia) in 2023.
Completely family-led, SRF is the largest non-government funder of SynGAP research, having committed over $5 million in grants in just five years. The vast majority of donations fund science and patient-related programs. SRF’s grant program awards one or two-year grants to investigators, physician residents, and clinicians interested in studying SYNGAP1. SRF grants are intended to help researchers explore novel ideas and answer open questions related to the clinical aspects of, and therapies for SRD.
SRF is a member of FasterCures, COMBINEDbrain, Global Genes Foundation Alliance, Everylife Foundation Community Congress, Epilepsies Action Network, Personalized Medicine Coalition, Rare Epilepsy Network, and the Epilepsy Leadership Council.For more on SRF, visit cureSYNGAP1.org or follow @cureSYNGAP1 on LinkedIn, YouTube, Instagram, Facebook, TikTok and X.