Wow – what a year! I think we can all agree that 2020 was hard. Even for our community that is accustomed to constantly having to adapt and change plans, as well as go through periods of social isolation for the health and well-being of our loved ones, 2020 presented challenges that none of us ever anticipated or could have planned for. 

While we still don’t know what 2021 will look like, I plan to enter it with optimism and hope. A handful of vaccines have been approved around the world, with several others in development. The availability of these vaccines, along with masking and social distancing, offer us an opportunity to get this outbreak under control and get back to some normalcy later this year. I personally look forward to the day that our community can gather together again safely at a DSF event.

Until then, DSF will continue to offer virtual programs and new resources for our patient community to help them navigate this complex medical journey until we are able to begin to meet again in person. Some of our 2021 initiatives include:

  • DSF Virtual Conference in June 2021 to educate the community on research, clinical care, upcoming trials, and more.
  • Virtual Town Halls that will offer updates on new research, clinical trials, and resources for the Dravet syndrome community.
  • Patient Welcome Packets for newly diagnosed families to help introduce them to this disease and steps they can take to guarantee the best treatment plan and quality of life for their loved one.
  • Newly Diagnosed Webinars that will help guide families through this medical journey, with an opportunity to connect, ask questions, and learn about the programs of DSF.
  • Promotion of the new ICD-10 codes for Dravet syndrome.
  • Participation in the Seizure Action Plan Coalition, which will bring awareness to what seizure plans are and their importance to keep patients with Dravet syndrome and other epilepsies safe.

Make sure to connect with DSF via our email list and on social media (Facebook, Twitter, Instagram, YouTube & LinkedIn) to make sure you receive information on these new initiatives as it becomes available, as well as to learn about other opportunities throughout the year. My hope for all of us in 2021 is to remain united while we keep fighting to make things better for patients and families living with Dravet syndrome. Wishing everyone health, happiness, and hope as this new year arrives!