Aleksi IlmonenĀ
Aleksi Ilmonen is originally from Finland and now lives in New Jersey with his wife Xian and two sons, Emil, 7, and Erik, 10, who has Dravetās syndrome. Aleksi has a masterās degree in marketing and worked as a strategic planner in advertising agencies for 10 years. Currently, he is concentrating on being Erikās main caregiver, advocate, and stay-at-home dad. To provide the best possible support for his own son and others living with the same condition, Aleksi served on the board of Dravet Syndrome Association Sweden, answering for digital member events and helping coordinate cooperation with pharmaceutical companies and research grants. Now, his advocacy work continues as a DSF Family Network Ambassador. He loves sharing his experiences and connecting with Dravet families in the North East region and anywhere online.
As a family, they will not let Dravet stop them from enjoying the outdoors, traveling, and an active life as much as possible. Adaptive skiing, swimming, beach, or hikesā nature is always a calming environment for his son Erik. Aleksi also is a community organizer for Dravet dads groups.