Simons Searchlight is a partnership of leading researchers, doctors, patient advocacy leaders, clinicians, participants, and families, determined to accelerate science and improve lives for people with rare genetic neurodevelopmental disorders. As part of this mission, Simons Searchlight works with a Community Advisory Committee (CAC) whose purpose is to advise and guide research and community activities on behalf of all Simons Searchlight participants and genetic communities.

We extend our heartfelt appreciation to the nearly 200 individuals who applied for our Community Advisory Committee (CAC). Each thoughtful submission was truly valued and considered. The CAC centers participants’ voices and shapes our research program. Let’s welcome our full CAC.

New Committee Members (Term through November 2025):

• Christie Abercrombie (Representing 16p Duplication)
• April Canter (Representing ASXL3)
• Jacquelyn Cattage (Representing SETD5)
• Rebeca Ridings Figueroa (Representing Cure CLCN4)
• Alida James-Fenner (Representing MAND Foundation)
• Adrienne Gilligan (Representing ARID1B)
• Piotr Kosla (Representing PACS2 Research Foundation)
• Ashley Point (Representing KdVS Foundation)
• Elizabeth Spitzer (Representing DYNC1H1 Association)

Current Committee Members (Serving Final Term through November 2024):

• Kathy Bergwerk (Representing SETBP1)
• Cecilia Dignani (Representing TAOK1)
• Sarah DiSalvatore (Representing DDX3X)
• Rebecca Dolan (Representing CSNK2B)
• Dina Gerber (Representing KDM5B)
• Stacey Hanna (Representing 16p Deletion)
• Alain Lartigue (Representing EP300/RTS 2)
• Alexandra Lee (Representing CSNK2A1)
• Marissa Mitchel (Representing NRXN1/2p16.3 deletion)
• Gilianne Nelissen (Representing GRIN2B Europe)
• Laura Palmer (Representing SHINE Syndrome)
• Cheryl Richt (Representing FOXP1 Foundation)

To get acquainted with our esteemed CAC members, visit our CAC webpage. We’re excited to continue to work with such dedicated and passionate individuals.