Jackie Kancir

Jackie Kancir and her young adult daughter, Jadyne, reside in rural northwest Tennessee. Jadyne had a lengthy diagnostic odyssey of 16 years. In 2019, a new primary diagnosis surpassed the long-standing duo of Lennox-Gastaut Syndrome and Autism when an Invitae exome panel confirmed SYNGAP1. Jackie has been a lifelong advocate since well before having children, though, and those skills have been invaluable raising a child with a developmental disorder. She is a multi-generational advocate, having learned an organized, informed, and tenacious approach to advocacy from her mother and grandmother. Her experience as a sibling of a brother with disabilities inspired her to form her first advocacy group in the mid-90s. She has been in the advocacy circuit in one realm or another ever since. Thus, Jadyne was born to a family prepared to effect change for her, and Jackie’s voice is loud and clear. In addition to volunteering with SRF, Jackie also advocates on both state and federal issues with several other organizations and advisory groups that align with her passion for improving our systems of support for individuals with intellectual and developmental disabilities (I/DD) and severe behavior symptoms. Finally, Jackie is a brain tumor survivor who knows firsthand how disabilities can impact all facets of a person’s life. This fact greatly influences her policy positions in her advocacy work. She enjoys the privilege of empowering other SRF families with tools needed to effectively advocate for their loved one(s) with SYNGAP1.

Jadyne’s Warrior Profile
Jackie’s interview on SYNGAP1 Stories

Jackie’s Advocacy Projects and Coverage

Email: Jackie@curesyngap1.org