image: CURE SYNGAP1 Board of Trustees at 2025 Conference in Atlanta
Credit: CURE SYNGAP1
Mill Valley, CA – April 15, 2026 – CURE SYNGAP1, the premier global patient advocacy group dedicated to transforming the lives of those living with SYNGAP1-Related Disorders (SRD), today announced evolution in its leadership. Effective April 15, 2026, the organization welcomes Craig Bower, PharmD; Allison Hirsch Hadar; Susan Johnson, MS, PE; Andrew Schillaci; and Ed Warshauer to its Board of Trustees.
These incoming leaders succeed outgoing Trustees Mike Graglia, MBA, MA; Peter Halliburton; Aaron Harding, MS; Mike Langen; Heather Mestemaker, MBA; and Lindsay Wieczorek, PhD, whose terms concluded on April 14, 2026.
Mike Graglia, Founder and CEO says, “CURE SYNGAP1 exists to serve SYNGAP1 patients and their families, which requires that the Board constantly turns over. As people serve on the Board, they improve the organization, and they learn about the complex work we do every day. It is hard enough to raise a SYNGAP1 patient, but doing that and serving on the Board while raising funds… these volunteers are simply exceptional, and we are grateful to them for their service.”
“We owe a profound debt of gratitude to our ‘old guard’—specifically Mike Graglia, Peter Halliburton, and Aaron Harding—who have completed their three-term limit. Their foundational leadership has brought us to this moment of clinical readiness,” says Suzanne Jones, MBA, CURE SYNGAP1 Board Chairperson. “We also recognize the vital contributions of Mike Langen as Board Treasurer, Heather Mestemaker, who provided strategic guidance during our operationalization, and Lindsay Wieczorek, who served with distinction as Science Director. Each was instrumental in institutionalizing our mission and preparing CURE SYNGAP1 for this next phase.”
“As we transition, we are energized by the fresh perspectives and high-level strategic acumen of our newly nominated Trustees,” Jones continued. “They join a mission that is primed for global impact, signaling a reinforced commitment to accelerating safe, effective, and targeted therapies for everyone living with SYNGAP1.”
The Outgoing Trustees: A Legacy of Foundational Leadership
About Mike Graglia, MBA, MA
A co-founder and the driving force behind the organization’s inception, Mike Graglia concludes his service on the Board after three transformative terms. Since his son Tony’s diagnosis in 2018, Mr. Graglia has served as the organization's Managing Director and CEO pro bono, evolving a fledgling parent group into a global authority in SYNGAP1 and rare neurological diseases. Mike’s leadership is informed by an extensive professional background in global healthcare strategy and public policy, including previous roles with The Gates Foundation, The World Bank, and BCG’s Healthcare group. A recognized leader in the broader rare disease landscape, he serves on the AES Epilepsy Research Benchmarks Stewards and the Executive Board of COMBINEDBrain. Mr. Graglia holds an MBA from Columbia University, an MA from Johns Hopkins SAIS, and a BS in Mathematics from Gonzaga University. While transitioning to a non-voting presence on the Board, Mike remains the presiding CEO of CURE SYNGAP1, based in California.
About Peter Halliburton
Peter Halliburton concludes his final term having served as a cornerstone of the organization’s executive leadership and governance. A technology sales professional based in Texas, Mr. Halliburton applied his expertise in relationship management to ensure CURE SYNGAP1’s growth was matched by operational excellence, notably driving fundraising efforts as Development Director. Peter’s journey began shortly after his son Carter’s diagnosis in 2019, at which time he transitioned from a dedicated volunteer to a pivotal Board member and a steadfast advocate for de-risking the science behind SYNGAP1. A graduate of Texas State University in Mass Communications, Peter’s legacy is defined by his commitment to professionalizing the foundation’s outreach and his deep personal dedication to the SYNGAP1 community.
About Aaron Harding, MS
Completing his final consecutive term on the Board, Aaron J. Harding, MS, has been a pivotal architect of the organization’s strategic expansion. A retired Naval Officer with 29 years of distinguished service, Mr. Harding applied his disciplined command experience to coordinate research grants with CURE SYNGAP1’s scientific partners. His professional background as a clinical laboratory scientist, coupled with a Master’s in Immunohematology from George Washington University, provided a rigorous technical framework for his leadership as the lead missense advocate for CURE SYNGAP1. Residing in San Diego, Aaron has been an active leader in the SYNGAP1 community since his son Jaxon’s diagnosis in 2015, ensuring the clinical foundation built today supports the treatments of tomorrow.
About Mike Langen
Serving as the Treasurer of the CURE SYNGAP1 Board of Trustees, Mike Langen has provided the organization with elite financial oversight. A Managing Director at J.P. Morgan since 2008, Mr. Langen’s expertise in assisting institutional clients with complex financial goals has been a vital asset to the foundation's fiscal growth. Driven by his son Charlie’s diagnosis in 2020, Mike’s advocacy now extends into the realm of long-term care and adult housing. Alongside his wife, Kathy, Mike is a founding member of Riverflow, an inclusive community for adults with intellectual and developmental disabilities in Vermont. A graduate of Tufts University, Mike remains a dedicated leader focused on long-term quality of life within the SYNGAP1 community.
About Heather Mestemaker, MBA
Heather Mestemaker concludes her term having brought unparalleled expertise in medicine commercialization and rare disease launch strategy to the Board. A Yale and Wharton alumna, Mrs. Mestemaker’s distinguished career includes marketing leadership roles at biopharma giants GSK and Merck and as Principal for a boutique consulting firm for biotech focused on genetic testing and Neurology. Heather’s strategic perspective was key in preparing CURE SYNGAP1 for its current phase of clinical engagement, specifically in navigating the complexities of drug development and market entry. Sparked by her son Thomas’s diagnosis, Heather’s passion for advancing solutions to address the challenges of SYNGAP1 has left a lasting impact on the organization's strategic roadmap. Although departing her official Board role, she remains a vital force in the community, continuing to consult on the intersection of patient advocacy and pharmaceutical commercialization.
About Lindsay Wieczorek, PhD
Dr. Lindsay Wieczorek concludes her term on the Board of Trustees after a period of meaningful scientific leadership and service to the SYNGAP1 community. She joined the Board as a SYNGAP1 parent to her daughter, Adeline, and brought more than 20 years of research experience, including a decade with the U.S. Military HIV Research Program. During her tenure, she served as CURE SYNGAP1’s Science Director. Dr. Wieczorek recently transitioned to a global leadership role as Chief Scientific Officer and Biorepository Director at COMBINEDBrain, a partner organization that connects patient advocacy groups, researchers, and industry to accelerate therapy development for rare neurodevelopmental disorders. Lindsay holds a PhD in Cellular and Microbial Biology from The Catholic University of America and an MS in Biotechnology from Johns Hopkins University. Dr. Wieczorek currently resides in Minnesota.
The Incoming Trustees: Professional Expertise & Advocacy
About Craig Bower, Pharm
A SYNGAP1 father to Camden and a community pharmacist, Craig Bower brings a perspective shaped by both healthcare experience and lived experience as a parent. Craig earned his Doctor of Pharmacy (PharmD) from the University of Kansas and holds a B.S. in Biochemistry and Molecular Biology from Emporia State University. Currently practicing pharmacy in Kansas, he has spent many years working on the front lines of healthcare and understands the challenges families face navigating complex medical systems.Since Camden’s diagnosis, Craig has taken an active interest in following SYNGAP1 research and emerging therapies while helping build connections within the rare disease community. Through advocacy, storytelling, and community engagement, he hopes to help families feel informed, supported, and less alone as they navigate the SYNGAP1 journey.
About Allison Hirsch Hadar
A SYNGAP1 mom to Emma and co-founder of the NYC-based concierge advocacy service Reimagine Together, Allison Hirsch Hadar brings a powerful combination of clinical nursing, research management, and special needs advocacy to the Board. Allison spent nearly a decade at Memorial Sloan Kettering Cancer Center, managing multidisciplinary research before transitioning to clinical nursing, where she treated high-acuity patients in neurology, neurosurgery, and the Neuro ICU. She holds a B.S. in Nursing from SUNY Downstate and a B.A. in Psychology from the University of Delaware. Emma’s SYNGAP1 diagnosis shortly after her first birthday redefined Allison’s mission. Allison now channels her clinical and advocacy expertise and lived experience through Reimagine Together, partnering with families navigating rare disease and special needs diagnoses to access resources, identify targeted therapies, and navigate complex systems so their children can reach their full potential.
About Susan Johnson, MS, PE
As a licensed Professional Engineer, Susan Johnson brings over 15 years of experience in strategic oversight and risk management within mission-critical environments to the Board. She also brings a SYNGAP1 perspective to the Board as Theo’s mother. Currently serving in a senior leadership role with the U.S. government, Susan advises executive leadership on infrastructure investment and operational readiness. Her pedigree includes senior roles at CannonDesign and HDR, Inc., where she guided engineering strategy for pharmaceutical and regulated manufacturing environments. Susan holds a Master of Science in Operations Management from the Simon Graduate School of Business and a B.S. in Mechanical Engineering from the University of Rochester. By blending a disciplined governance mindset with her firsthand experience as a parent, Susan is a formidable addition to the Board.
About Andrew Schillaci
A SYNGAP1 father with a finance background, Andrew Schillaci brings unique experience in strategic brand partnerships and digital advocacy to the Board of Trustees. With a B.S. in Business and Economics from Lehigh University, Andrew transitioned from a finance track into the luxury wellness sector, where he currently serves as the Fitness Program Coordinator for Casa Cipriani in New York City. In this role, he spearheads brand activations and events with global entities such as Samsung and New Balance. Andrew’s son, Matteo, was diagnosed through the Guardian Study at New York-Presbyterian—a rare case of pre-symptomatic identification that has fueled Andrew’s passion for advocating. Leveraging a significant social media platform and a background in high-profile event operations, Andrew is dedicated to expanding CURE SYNGAP1’s visibility through modern, action-oriented digital support networks.
About Ed Warshauer
A seasoned organizational strategist, Ed Warshauer brings decades of experience in high-stakes negotiation, public policy advocacy, and non-profit leadership to the Board of Trustees. A graduate of Harvard College, Ed has spent his career at the intersection of labor and healthcare, previously serving as the San Francisco Director of the Healthcare Division for the SEIU and having led complex negotiations with global entities such as Boeing and Lockheed-Martin. Appointed by then-Mayor Gavin Newsom to the San Francisco Universal Healthcare Council, Ed is a specialist in navigating highly regulated systems. Motivated by his son, Jack, who was recently diagnosed with SYNGAP1-Related Disorders, Ed is applying his background in strategic oversight and media outreach as a Trustee for CURE SYNGAP1 interested in accelerating progress.
The Board of Trustees: Governance & Stewardship
The CURE SYNGAP1 Board of Trustees serves as the primary governing body, providing the oversight and strategic direction necessary to achieve the organization's mission. The Board is responsible for the fiduciary stewardship of resources, ensuring that the non-profit operates with the highest standards of legal and ethical accountability. Rather than managing day-to-day operations, the Trustees focus on long-range planning, risk management, and organizational resilience, ensuring that every milestone reached aligns with the urgency of our community’s needs.
Committed to excellence, our Board is composed of dedicated volunteers who are relatives to someone living with SYNGAP1 and serve a minimum two-year term. Key executive leadership is anchored by the Chairperson, Secretary, and Treasurer, who coordinate the Board's efforts in executive oversight and committee service. Since its inception, CURE SYNGAP1 has been guided by 37 distinct community leaders. This intentional rotation of leadership ensures a diversity of professional expertise and lived experiences, maintaining a Board that is a true and evolving reflection of the families we serve.
About SYNGAP1-Related Disorders (SRD)
SYNGAP1-Related Disorders (ICD-10 F78.A1) are a rare genetic disorder caused by variants on the SYNGAP1 gene that reduce SYNGAP1 protein levels. CURE SYNGAP1 has identified over 1,761 SRD patients to date, and the number grows weekly. This protein acts as a regulator in the synapses (where neurons communicate with each other). When SYNGAP1 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 SRD patients.
Symptoms of SRD include primarily neurological issues including autism spectrum disorder (ASD), global developmental delay leading to intellectual disability, epilepsy, hypotonia (low muscle tone), gross and fine motor delays, and visual abnormalities such as strabismus (crossed eyes) as well as disordered sleep and gastrointestinal challenges.
About CURE SYNGAP1
CURE SYNGAP1 improves the quality of life for SYNGAP1 patients through the research and development of treatments, therapies, and support systems.
CURE SYNGAP1 was founded in the US in 2018 as a 501(c)(3) US public charity. There are sister organizations founded by local families in the UK in 2020, Europe (the Netherlands) in 2022, as well as both Australia & Latin America (Colombia) in 2023. Completely family-led, CURE SYNGAP1 is a leading funder of SYNGAP1 research having committed over $8 million in grants as of December 31, 2025.
CURE SYNGAP1’s grant program awards pilot, one-year and two-year grants to researchers and clinicians studying SYNGAP1. Their mission is to accelerate the availability of safe and effective treatments that meaningfully modify SRD to reduce suffering for patients and their families. Current funding priorities include essential milestones for clinical trial readiness. You can learn more about CURE SYNGAP1 and their accomplishments by reading their most recent Impact Report.
For more on CURE SYNGAP1, visit cureSYNGAP1.org; subscribe to the CURE SYNGAP1 Podcast, SYNGAP1 Stories, and Café SYNGAP1; and follow @cureSYNGAP1 on LinkedIn, YouTube, Instagram, Facebook, TikTok, or X.
CURE SYNGAP1 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, The World Orphan Drug Congress, and Research America.