Even though I believe all of us are ready to bid goodbye to 2020 and move onto 2021, I wanted to take the time to reflect on and highlight some of the positive things that happened this year. Below is my recap of what DSF has accomplished in 2020, as well as other exciting advances that impact the Dravet syndrome community. I remain thankful and optimistic because of the continued collaboration of our patient families, supporters, clinicians, researchers and industry members, even during these unprecedented times. If you missed any of these announcements, click the links to learn more.
- After this year’s award announcements, DSF has awarded $4.965M to Dravet-specific research projects.
- DSF has given over $176K in patient assistance grants to families, supplying patients with durable medical goods, therapy equipment, and educational tools.
- We welcomed our new Scientific Director, Dr. Veronica Hood, to our team in June.
- We received approval of new ICD-10 codes specific to Dravet syndrome.
- We weren’t going to let COVID-19 slow down research, so this year DSF hosted our 11th annual DSF Research Roundtable as a virtual event with over 175 attendees.
- We turned our Day of Dravet workshops into a single one-day virtual event to bring together our families for educational sessions and time to connect with one another.
- Zogenix collaborated with DSF to create new VIP Sibling Kits and parent resources.
- We created an educational series for families to take the place of our biennial conference, which had to be postponed.
- In collaboration with our Medical Advisory Board, we created Listen + Learn: Dravet Syndrome, a series of educational webinars for professionals.
- Along with the LGS Foundation and the Tuberous Sclerosis Alliance, DSF formed the Seizure Action Plan Coalition to raise awareness of seizure plans and their importance to assure patients receive appropriate medical care during a seizure emergency.
Other exciting news for the Dravet community in 2020:
- Fintepla received FDA-approval for the treatment of patients with Dravet syndrome in June, making it the 3rd new medication for the Dravet community since 2018.
- Two new nasal rescue medications –Nayzilam and Valtoco – received FDA approval. These new medications add to the options available for patients, and allow for easier and less invasive administration in seizure emergencies.
- New clinical trials were underway for the Dravet community – Clemizole (EPX-100), Lorcaserin (Belviq), Soticlestat (TAK-935), and Stoke Therapeutics’ antisense oligonucleotide therapy (STX-001). We also anticipate a trial to begin in 2021 from Encoded Therapeutics using their viral gene therapy (ETX101).