Our Board

 

The CACNA1A Foundation, Inc. was founded in January 2020 when three families connected over their shared desire and sense of urgency to fund innovative research to find better treatment options for their affected children. 

 
 
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Lisa Manaster
President

Lisa Manaster is eager to help build awareness and accelerate the discovery of treatments for CACNA1A. She lives in CT and has three children and one soon to be daughter-in-law. After years of genetic testing, her youngest daughter finally received a diagnosis of CACNA1A in 2016, at the age of 19. While Lisa does not believe earlier identification would have changed their path, supporting research for a cure has become her passion. Lisa has worked as both an advocate and a special educator. She received interdisciplinary leadership training in the field of developmental disabilities as a Fellow in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the Westchester Institute for Human Development. Lisa has a Bachelor of Arts in History from Cornell University and an MA from Teachers College, Columbia University. She is excited to be a founding partner of the CACNA1A Foundation and improve the lives of those affected with CACNA1A.

lisa@cacna1a.org

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Carolyn Anderson
Secretary

Carolyn Anderson was introduced to the Rare Disease community following her daughter’s diagnosis with a CACNA1A gene variant in 2019. Her family had high hopes there would also be a treatment for their daughter, but like the majority of those affected by a rare disease, there is no treatment or cure. It is their dream to help researchers develop a treatment and cure for CACNA1A patients.

Carolyn lives with her family in Northern Virginia and cares for her twin daughters. She previously worked in the fields of Crime Analysis and Child Welfare. Carolyn holds a Bachelor’s Degree in Criminology from Florida State University and Master’s Degree in Forensic Psychology from Marymount University.

carolyn@cacna1a.org

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Shanna Tolbert
Treasurer

Shanna Tolbert lives in Atlanta with her husband, Terry, and two daughters, the oldest of whom has a CACNA1A variant. She believes that with adequately funded research, life-changing treatment options can be available to CACNA1A patients. Shanna has a BBA in Economics from the University of Georgia. After a middle school teaching career, she is now home with her children and dedicating time to the CACNA1A Foundation's efforts. She is honored to be a founding member of the CACNA1A Foundation and is excited for the organization's future of making a difference in the lives of affected families.

shanna@cacna1a.org

 
 
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Allison Buchner
Member

Allison Buchner lives in Los Angeles with her husband and two daughters. In 2019, Allison’s oldest daughter, who was 10 years old at the time, was diagnosed with a CACNA1A gene variant. Allison believes that like her daughter, there are likely many undiagnosed CACNA1A children (and adults) in the world who have for years been given broader, umbrella diagnoses, like cerebral palsy, as they waited for science to discover the true cause of their movement disorders or other challenges. Her hope is that with awareness and research support, those with CACNA1A will have greater access to knowledgeable medical professionals and other service providers, and ultimately, to treatments. Allison is also a full-time attorney who specializes in intellectual property litigation, and she also has a robust pro bono practice, primarily focusing on special education law and legal advocacy for those with disabilities.  She also serves on the Boards of Directors for the Disabilities Rights Legal Center and WISHForward (which aims to empower all students through inclusive education).

allison@cacna1a.org