Heather Bensch

Community Activation

Heather is a veteran of the United States Air Force, a college graduate, and an experienced life coach who works with and advocates for the special needs community.  She is also a Partners in Policymaking leadership member for the state of Tennessee who works closely with the Council of Developmental Disabilities in ensuring equal opportunities for the disabled.  She lives with her family in West Tennessee, is a wife, and mother of four children, the oldest of whom is an adult with special needs. 

After a difficult pregnancy and delivery, her oldest daughter McKaela was born, and she knew right away that she was different.  Her daughter failed to meet important developmental milestones, and when she was five years old, she was diagnosed with severe Autism and an Intellectual Disability.  Over the years, McKaela was also diagnosed with hypertonia, absence seizures, a communication delay, and eventually Syngap1 through genetic testing which she received through SPARK, an Autism research study.

In addition to working from home so that she can be a full-time caregiver to her daughter, Heather volunteers with the SynGAP Research Fund.  In that role, Heather works closely with new families to help them learn how to cope and hosts the weekly family zoom call for the community.  Heather says that through volunteering, she can be proactive and make a direct impact on McKaela’s quality of life and on the lives of others who are living with SYNGAP1.

Email: heather@curesyngap1.org