Community News & Programs
Incoming and Outgoing Board Presidents, Kate Hintz & Nicole Villas Please join us in thanking Nicole Villas for volunteering on DSF’s Board of Directors for the last 6 years. Nicole joined the board in April 2015, serving as president since 2016. In addition to leading the board, Nicole also served as Scientific Director. In this […]
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We have several versions of Facebook Frames available for our 2021 Dravet Syndrome Awareness Month, encompassing our theme of JOIN THE FIGHT! Click here to view available facebook frame designs
2021 Join the Fight Facebook Frames Read More »
Meet Heather & Luella! In this month’s Community Spotlight meet Heather Johnson and her Dravet Warrior, 11-year-old Luella. Heather and Luella have helped spread awareness and raise funds for DSF over the years in a variety of ways. One of the most notable ways is their annul campaign, a cake 4 a cure. Heather’s initial
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Give Up Your Cup Each March, DSF challenges you to Give Up Your Cup. This annual virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to raise funds
Will You Give Up Your Cup? Read More »
Finding Resilience Through Reframing: Parents’ Perspectives As a Dravet parent or caregiver, have you ever thought about the term “reframing?” Community member Barbara Swoyer recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine. In this piece, Barbara incorporated the thoughts of others in the Dravet community about what reframing means
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Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. Thanks to continued collaboration with Zogenix we
Parent & Sibling Resource Kits Read More »
Get Connected with DSF on our social media channels Like and share our posts to help raise awareness! Facebook: @DravetSyndromeFoundation X: @curedravet Instagram: @dravetsyndromefoundation YouTube: www.youtube.com/dravetsyndromefoundation LinkedIn: https://www.linkedin.com/company/dravet-syndrome-foundation TikTok: https://www.tiktok.com/@dravetsyndromefoundation Bluesky: https://bsky.app/profile/curedravet.bsky.social
Honoring our Children. Celebrating Hope. Remembering those who have passed. Our 1st Wings of Hope butterfly release took place July 22, 2018 in Aurora, Colorado We were able to honor those with Dravet syndrome, celebrate hope, and remember those who have passed. Thank you to our event sponsor:
Wings of Hope Butterfly Release Read More »
