Jenny was born and raised in a small town in Morris County NJ where she lives with her daughter Lena who has Dravet syndrome and autism and her partner Dennis. At 8/12 months old, Lena had her first tonic-clonic (grand mal) seizure which lasted 20-25 minutes which was not brought on by fever. Lena continued to suffer many more tonic-clonic seizures as well as developing absence and myoclonic jerks leading to genetic testing which would reveal a mutation in the SCN1A gene in 2009 at the age of 2.
Jenny has her BA in Psychology from the College of Saint Elizabeth and previously worked as a Behavior Health Counselor, Administrative Assistant and a Network Project Program Manager in a telecom company. She is Co-President of the PTO at her daughter’s school and a member of the Family Leaders for Perform Care of NJ.
She joined DSF in 2019 as Administrative/Fundraising Coordinator moving into the role of Special Events Director in 2021. You can usually find Jenny wearing some kind of Purple or sporting a Dravet syndrome shirt, ribbon or maybe just driving around in her jeep, appropriately dubbed “HOPE”, with purple accents and ribbons raising awareness wherever the road takes them. Her mission is to raise funds, promote research and advocate awareness for Dravet syndrome. Her goal is to not only help her daughter and all the dravet warriors to some day lead a “seizure free” life, but to assist with the “quality of life” where they are not constantly “losing” moments of time while they are waiting for “A cure for more moments!”
