Allen, originally from the Chicago area, resided in six different states for over 25 years before settling in Central Florida with his two daughters. His involvement in Dravet Syndrome advocacy began when his younger daughter, Abigaile, experienced her first seizure at five months old. The family spent years pursuing an accurate diagnosis, ultimately identifying Dravet […]
Siobhan Grevelding – NY Siobhan is a dedicated caregiver to her youngest son, Lennox, who was diagnosed with Dravet syndrome in June 2021 at just one year old. Residing in Syracuse, New York, Siobhan is part of a large blended family of seven. Siobhan made the difficult decision to leave her full-time position in the
Siobhan Grevelding – NY Read More »
This little body held a secret. Eight days after this picture was taken, on February 16th, 2014, this little boy would have his first seizure on a chilly Sunday afternoon while on a walk in his stroller with mom and dad. Over the next 10 months we watched him seize, turn blue, take medication,
10 Years: A Seizure Anniversary Read More »
In a world where social media is omnipresent, an organization and company’s need to create social media brand ambassadors within the platforms is becoming more and more apparent. In a global poll, Statista.com looked at social media users and where they get most of their news information. A whopping 48% of people in the United
Looking for Brand Ambassadors to help further the mission of DSF! Read More »
We are so excited to announce the cohort of Family Network Ambassadors for the 2024-2025 term! These volunteers are all parents of children and adults with Dravet syndrome. Because of that they all possess the ability to truly empathize and understand the journey as a family living with, battling, and working through life with Dravet
Join Us in Welcoming our New Family Network Ambassadors Read More »
Last week’s blog post was a brief overview about how the Family Network Ambassadors and the Brand Ambassadors function within our organization to help further the mission of DSF. But let’s dive deeper… The mission of DSF is what drives us as a foundation and a community. We continually look for ways to deepen this
What do DSF Family Network Ambassadors and Brand Ambassadors do? Read More »
When you are going through something hard it’s always good to know that there are people “in the same boat” as you are. And while I appreciate the sentiment I’m not sure that it is the best way to talk about the community that we have as families living with Dravet syndrome. I think that
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Aleksi Ilmonen 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 Dravet’s syndrome. Aleksi has a master’s degree in marketing and worked as a strategic planner in advertising agencies for 10 years. Currently, he is concentrating on being
Amy lives in northeast Massachusetts with her husband Lenny and their two children Becca and Isaias. In 2012 Isaias was diagnosed with Dravet Syndrome at 16 months old. Amy quickly became involved in the DSF Facebook group where she found support and lifelong friendships. Amy and her family have hosted and participated in fundraising walks
