As Thanksgiving approaches, I am struck by the debt of gratitude I have for the many people – including patient families, clinicians, researchers, supporters, and organizations – that have enabled DSF to serve the Dravet syndrome community by funding important research, raising awareness, and offering support to affected individuals and their families. Living with Dravet syndrome is hard. But having a supportive community and the resources you need to assure your loved one has the best care and quality of life makes things a little easier.

2020 has been a tough year for us all. A public health crisis like COVID-19 causes each of us anxiety and stress, and our patient families report feeling more isolated than ever. At times like this it is important to assure that the programs of DSF continue uninterrupted for the Dravet community. DSF is a small organization with just 5 full- and part-time staff members. Our staff has worked hard to reimagine our live events and we have adapted to these unprecedented circumstances. Since March, new programs have included both an educational webinar series and a virtual workshop to keep the community up to date on the latest in research and treatments; resource kits for siblings and parents; and moderated Zoom meetings for families to connect with one another. As we move forward, we will continue to prioritize people, impact, partnerships, and community safety.

DSF could not have met with the success we have had without the generous support and cooperation that the many donors, supporters, and friends of DSF have offered over the years. We raise the bulk of our funding through generous gifts at our live fundraising events, all of which were cancelled after March of this year. Thanks to your past support, DSF had built up a reserve that allowed us to continue our research grant program and patient programs uninterrupted for 2020. 

Your continued support and generosity will assure that there is no disruption in our future programs and services. If you’re able this year, please consider a year-end donation to DSF. If you’re unable to donate at this time, there are many other ways you can support us! Consider setting up a Facebook fundraiser for DSF and you can advocate for us by sharing our mission with family or friends who would like to donate to a worthy cause. Or, make sure to follow us on Facebook, Twitter, Instagram, YouTube, and LinkedIn. A quick mention to your followers would mean the world to us and helps others learn about Dravet syndrome and the important work that DSF does.

We will make it through these difficult times together. Thank you for being a part of the Dravet syndrome community – without you, none of what we do is possible. Your continued support is truly appreciated and all of us at DSF wish you and your family a happy and healthy holiday season.