DSF Parent Ambassador

Aleksi Ilmonen – NJ (Northeast)

Aleksi Ilmonen (Northeast region)

Aleksi Ilmonen is originally from Finland, then lived in Sweden and now resides in Basking Ridge, New Jersey with his wife Xian and two sons Emil, 5 and Erik, 8 who has Dravet’s syndrome.  Aleksi has a masters degree in marketing and worked as an Strategic Planner in advertising agencies for 10 years. Currently he is concentrating on being Eriks 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.

 As a family they will not let Dravet stop enjoying the outdoors, travel and good food. Skiing, sea, beach or hikes, nature always grounds them and gives energy. As a hobby Aleksi can design and DIY anything related to houses or furniture. He is looking forward to really integrating with the North East US Dravet community and sharing everything he has learned about living with Dravet’s syndrome.


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