We are kicking off Dravet Syndrome Awareness Month on June 1st, and there are plenty of ways to participate this year!
Your support and hard work has been instrumental in the progress made for our patient community in the last decade. Now more than ever, we need your help! Please commit to raise public awareness of Dravet syndrome in one or more ways this June.
Help us raise awareness. Follow us on social media and share our posts to raise awareness of Dravet syndrome.
Start a fundraising campaign. Join our Awareness Month fundraiser. Set up a personal fundraising page for free. Raise $250 and receive a t-shirt with the new DSF logo or raise $400 and receive a hooded sweatshirt with the new DSF logo.
Tell your story. Share your family’s story on our website or through social media. If you are unsure where to start, we recently hosted two webinars to help teach you the basics:
- Effective Storytelling Techniques that Raise Awareness, Engage Donors, & Build Community
- How to Share Your Stories on Social Media
Join us at one or more awareness activities this month. This year we have even more ways for you to be involved.
- June 1:
- Awareness Month begins. Be sure to sport your purple and wear any Dravet syndrome awareness gear you have throughout the month.
- New DSF logo announcement
- June 13:
- Debut of The Balancing Act Presents: Behind the Mystery of Dravet Syndrome on Lifetime TV at 7:30am ET/PT. Be sure to watch and share with family & friends! More details here.
- June 15:
- 2nd annual Dravet Remembrance Day – Join us to reflect and remember those who we have lost to Dravet syndrome during a Facebook Live at 12:00pm ET.
- June 21:
- Rebroadcast of The Balancing Act Presents: Behind the Mystery of Dravet Syndrome on Lifetime TV at 7:30am ET/PT. Be sure to watch and share with family & friends! More details here.
- June 23:
- International Dravet Syndrome Awareness Day
- DSF Family & Professional Conference kicks off
- New DSF website launch
- June 25:
- Join us for Wings of Hope in person at our conference, or via Facebook Live at 8:00am ET, as we host our 2nd butterfly release as we honor our children, celebrate hope & remember those who have passed
By Mary Anne Meskis|May 27th, 2022|Categories: Decoding Dravet Blog
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About the Author: Mary Anne Meskis
Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council. She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF. Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.