Virginie McNamar appointed President and Chief Operating Officer (COO) of SynGAP Research Fund (SRF) dba Cure SYNGAP1

(Press-News.org) Mill Valley, CA – December 1, 2024 – SynGAP Research Fund 501(c)(3), the leading patient advocacy group working to improve the lives of SYNGAP1-Related Disorders (SRD) patients, announces the appointment of Virginie McNamar as President and Chief Operating Officer, effective December 1, 2024.

“Virginie was a respected leader in the global SYNGAP1 community before SRF was founded.  Her support and guidance in the early years was critical. Almost six years later, the SRF organization has grown to the point where a full time leader to manage the team, partners, and operations is overdue. Virginie’s experience in Rare Disease advocacy, demonstrated commitment to the SYNGAP1 global community, and tremendous talent made her an obvious choice for this role. Partnering with her to grow SRF for the benefit of SRD patients is already exciting. I’m grateful she accepted this role and look forward to her leadership,” stated Mike Graglia, SRF Founder and CEO.



The SRF Board of Trustees resoundingly approved the appointment of Virginie McNamar. “With the strategic objective of building out our upper management team, the Board established a cross-organizational search committee to conduct a thorough vetting process of viable candidates. Virginie’s extensive background in the rare space, coupled with her deep understanding of SYNGAP1, enable her to bring invaluable expertise to our organization. These qualifications, combined with proven corporate operational and project management skills, make her uniquely positioned for the role of President and Chief Operating Officer. Virginie is poised to hit the ground running as she delivers on advancing SRF’s mission and key priorities,” according to Suzanne Jones, SRF Board of Trustees Chair.



“It is an incredible honor to step into this role and continue the mission that has meant so much to my family and me,” said Virginie McNamar. “My journey with the SYNGAP1 and Rare Disease community began eight years ago, following my son Ty’s diagnosis. Since then, I’ve been inspired by the unwavering dedication of this community and humbled to witness the remarkable growth and impact of our organization.”



SRF has become a recognized force within the Rare Disease space, earning accolades from Rare Disease leaders, pharmaceutical companies, researchers, and other stakeholders for its exceptional recruitment capabilities, community engagement, and scientific contributions. “We’ve truly put SYNGAP1 on the map,” Virginie McNamar added. “I’m genuinely proud to be part of an organization that continues to set the standard for progress in Rare Diseases.”



Looking ahead, Virginie McNamar emphasized the need for robust organizational structure and strategic focus to meet the growing demands of the community and prepare for the next phase of clinical advancements. “We’ve moved fast, and with several clinical trials on the horizon, we need to accelerate. We must ensure our organization and community are ready. Simultaneously, we continue to invest in critical programs such as drug repurposing, family education, and advocacy, among others.”



In this new role, Virginie McNamar will work closely with CEO Mike Graglia, in addition to Dr. Kathryn Helde, PhD (Chief Scientific Officer), Lauren Perry (Operations Director), and an extraordinary team of leaders and volunteers. “I’m excited to collaborate with and support this talented team as we serve the global SYNGAP1 community and drive the organization to the next level,” Virginie McNamar said.



About Virginie McNamar

Virginie McNamar lives in Indianapolis with her husband and three children. She is originally from France where she graduated with a Masters in Marketing from Execlia Business School. She started her career in volunteer management first supporting large national and international events and later supporting nonprofit organizations. She worked as a product director for a volunteer management software company and then launched a social impact platform to support communities.  Most recently, she was the Advocacy Partnerships Lead for Rare 7 Neurological Disease at Ciitizen, when it was a part of the Invitae Data Platform.  There, she built partnerships with over 40 rare neurological and Rare Disease organizations.



Virginie’s youngest son was diagnosed with SYNGAP1-Related Disorders (SRD) in November 2016 at the age of 16 months. Since then, Virginie has dedicated her free time to help raise awareness, build strong local communities, and facilitate global collaboration. She co-founded Syngap Global Network and was a member of the original SRF leadership team. 



Responsibilities as President and COO

The President and COO reports to the CEO, alongside the CSO and CFO. The President and COO leads the strategic and operational functions of our organization, in addition to working closely with the CEO and Board of Trustees to develop and implement strategies that maximize the impact of SRF.



About SYNGAP1-Related Disorders (SRD)

SYNGAP1-Related Disorders (ICD-10 F78.A1) is a rare genetic disorder caused by variants on the SYNGAP1 gene that reduce SynGAP protein levels. SRF has identified over 1,497 patients to date, and the number grows weekly. The SynGAP protein acts as a regulator in the synapses (where neurons communicate with each other). When SynGAP 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.



Symptoms of SYNGAP1 include primarily neurological issues including autism spectrum disorder (ASD), intellectual disability, epilepsy, hypotonia (low muscle tone), gross and fine motor delays, global developmental delay, and visual abnormalities such as strabismus (crossed eyes), as well as gastrointestinal challenges and disordered sleep.



About the SynGAP Research Fund dba Cure SYNGAP1

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 $6.2 million in grants. The founders cover operational costs, ensuring that donations fund science & 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.



For more on SRF, visit curesyngap1.org or follow @cureSYNGAP1 on LinkedIn, YouTube, Instagram, Facebook, TikTok, or X.



SRF is a member of FasterCures, COMBINEDBrain, Global Genes Foundation Alliance, Everylife Foundation Community Congress, Epilepsies Action Network, Personalized Medicine Coalition, Rare Epilepsy Network, Epilepsy Leadership Council, Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA), California Action Link for Rare Diseases, American Brain Coalition, Genetic Alliance UK, Rare Disease UK, Syndromes Without a Name (SWAN UK), Jumpstart Program, Patient Worthy, Autism Brain Net, Innovation and Value Initiative, Rare Disease Diversity Coalition, Cambridge Rare Disease Network, Breaking Down Barriers, Rare-X, Mencap, IndoUSRare, and The World Orphan Drug Congress.

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