SynGAP Research Fund (SRF), dba Cure SYNGAP1, announces Board of Trustees Update 2025

(Press-News.org) Mill Valley, CA – April 15, 2025 – SynGAP Research Fund (SRF), dba Cure SYNGAP1, the leading patient advocacy group dedicated to improving the lives of those affected by SYNGAP1-related disorders (SRD), today announced the appointment of Jaime Aranda, Steve Gore, Heather Mestemaker, and Brian Smith to its Board of Trustees, effective April 15, 2025. They will succeed outgoing Trustees Emily Barnes, Sydney Stelmaszek, and Stella Tavilla, whose terms conclude on April 14, 2025. Additionally, a seat previously held by Pavel Gerovich, who stepped down in June 2024 for employment-related reasons, will also be filled.

“We are fortunate to have a dedicated team providing governance, strategic oversight, and fiduciary leadership to advance SRF’s mission in the SYNGAP1 rare disease space. As SYNGAP1 family members, our Trustees bring a deep, personal understanding of our desire to support the SYNGAP1 community, drive the development of therapies, and establish clinical sites in an effort to enhance the SYNGAP1 quality of life and, ultimately, cure SYNGAP1-related disorders,” states Suzanne Jones, MBA, SRF’s Board of Trustees Chairperson.

The SRF community warmly welcomes the newest members of its Board of Trustees, who bring a wealth of talent to our patient advocacy group. We also extend our heartfelt gratitude to our outgoing Trustees for their devoted service and invaluable contributions to SRF.

Incoming Trustees: About Jaime Aranda An accomplished corporate governance professional with extensive project management experience, most recently at Partners Group and Freshfields Bruckhaus Deringer, Mr. Aranda stepped away from his career during COVID to care for his children. He later served on the Hilltop Children’s Center Board for several years and has remained active in real estate investment. This diverse background equips him well for his role as a Trustee. Following his son’s SYNGAP1 diagnosis in late 2024, Mr. Aranda quickly became engaged with SRF, attending the 2024 SYNGAP1 Conference in LA and advocating on Capitol Hill for Rare Disease Week with other SYNGAP1 parents. A native of Spain and current resident of suburban Chicago, Mr. Aranda holds an undergraduate degree from University of Seville (Spain), a secondary degree from London Metropolitan University (United Kingdom), and a graduate degree from BPP University Law School in London (United Kingdom).

About Steve Gore Steve Gore’s expansive senior executive experience and board leadership make him a valuable addition to SRF’s Board of Trustees. With a distinguished career spanning over a decade in leadership at Gerber Scientific, followed by several years as Chief Operating Officer at Momentum Manufacturing Group, he now serves as President and CEO of Alinabal Group. Mr. Gore has also held various board positions, including serving as Chair of the Concord Christian Academy Board and as a board member for the Monarch School of New England. After years of medical consultations, his daughter was finally diagnosed with SYNGAP1 at age 10 in 2016. Now that she is an adult, Mr. Gore is committed to apply his strategic leadership expertise to advance SRF’s mission to cure SYNGAP1. A longtime New Hampshire resident, Mr. Gore holds a BS in Business Management from New Hampshire College and an MBA from Southern New Hampshire University.

About Heather Mestemaker Having previously consulted with SRF on high-level strategic planning, represented SRF at conferences and events in her local Philadelphia area, and presented on Cell and Gene Therapy at a BIOTECHx conference, Heather Mestemaker is already deeply engaged with SRF. With a strong background in marketing leadership within the biopharmaceutical industry—primarily at GSK and Merck—Mrs. Mestemaker is currently an independent consultant. She most recently served as Vice President, Medicine Commercialization Lead at GSK for a rare liver drug. Her biopharma expertise spans marketing, commercial launch strategy and operations, analytics, and sales. Additionally, she has consulted in marketing, strategy, and healthcare in general. Having a son with SYNGAP1 has fueled her passion for advancing rare disease drug and treatment discovery. Mrs. Mestemaker holds a BA in Psychobiology from Yale University and MBA from The Wharton School of Business, University of Pennsylvania.

About Brian Smith Brian Smith brings a wealth of expertise to SRF’s Board of Trustees, further diversifying the backgrounds represented with his vast engineering experience. Currently Vice President of Engineering and Logistics Services at Dollar Tree Stores, Inc., Mr. Smith has held various engineering leadership roles at Amazon and spent more than a decade at Dematic Corporation. Residing in Virginia Beach, Virginia with his family, Mr. Smith felt called to join SRF after his youngest child was recently diagnosed with SYNGAP1. His commitment to SRF reflects the dedication of families working tirelessly to support and advocate for children affected by the disorder. Mr. Smith holds a BS in Mechanical Engineering from Kettering University and an MBA with a Finance focus from Grand Valley State University.

Outgoing Trustees: About Emily Barnes Emily Barnes of Danvers, MA served on SRF’s Board of Trustees’ executive team as Secretary for the past two years, playing an instrumental role in the organization’s oversight. She is stepping down to focus on her family, including her daughter, who was diagnosed with SYNGAP1 in 2022. Mrs. Barnes holds a BS from University of Arizona and has built a longstanding career in the telecom industry, where she gained valuable experience in project management, relationship building, and strategic analytics. While she is transitioning off the Board, her passion for advocacy and commitment to the SYNGAP1 community will remain steadfast, as will her dedication to supporting SRF initiatives.

About Pavel Gerovich Currently residing in suburban New York City, Pavel Gerovich has built a distinguished career in the financial sector, spanning several years and multiple continents. Armed with a BS in Finance from Bentley University in Massachusetts, he has applied his expertise building financial services software. As the father of a child with SYNGAP1, Mr. Gerovich has been deeply involved with SRF, contributing as both a Trustee and a key figure in grants management. He has also made a lasting impact as a former Chairman of SRF’s Board of Trustees, bringing thoughtful and insightful leadership to advance the patient advocacy group’s mission and support groundbreaking research. 

About Sydney Stelmaszek A pivotal SRF volunteer, Sydney Stelmaszek resides in Pittsburgh, PA. Having just welcomed her fourth son, Mrs. Stelmaszek is balancing motherhood—including caring for a son with SYNGAP1—with her career and ongoing advocacy. The Stelmaszeks have hosted large-scale fundraisers for SRF over the years, including Cannonball for the Cure and the 2024 UFD Charity Stream, a six-day, 21-hour livestream fundraiser. (The timing corresponds with the genetic address for SYNGAP1, 6.21, as the SYNGAP1 gene is located on the 6th chromosome at the 21st locus.) A graduate of University of Florida with a degree in zoology, Mrs. Stelmaszek has dedicated her career to nonprofit work, including a long-standing role with Life Child Africa Foundation.

About Stella Tavilla With an impressive background in corporate management and consulting—including her tenure as CIO for Home Shopping Network—Stella Tavilla has been a dedicated and influential member of SRF’s Board. Her previous board experience has greatly enhanced her leadership at SRF and contributed to her impactful governance expertise. Ms. Tavilla and her sisters have united in support of their brother, whose daughter was diagnosed with SYNGAP1 in 2019. The Tavilla family has been a major contributor to SRF and is known for championing a top-performing Sprint4Syngap fundraising team. Now retired, Ms. Tavilla resides in coastal North Carolina where she remains active in the local SYNGAP1 community.

SRF Board of Trustees Responsibilities SRF Trustees 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. Committed to excellence, our Board members are volunteers and SYNGAP1 relatives who serve a minimum of two years, with key executive roles held by the President, Secretary, and Treasurer. Since its inception, there have been 32 different members on the Board. This has brought unique perspectives from our community while also enabling SRF to engage diverse, experienced individuals who represent all of our families.

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. SRF has identified over 1,581 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 SYNGAP1 patients.

Symptoms of SRD 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 The mission of the SynGAP Research Fund (SRF) dba Cure SYNGAP1 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.  There are sister organizations founded by local families in the UK in 2020, Europe (Netherlands) in 2022, as well as both Australia & Latin America (Colombia) in 2023. Completely family-led, SRF is a leading funder of SYNGAP1 research having committed over $6.2 million in grants to date.

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. You can learn more about SRF and their accomplishments by reading their current Impact Report.

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, The World Orphan Drug Congress,  and Research America.

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