DSF’s 2025 Day of Dravet regional workshops provided the opportunity for patient families to come together to learn, connect, and feel supported. While many of our patient families are already connected through social media, the opportunity to connect in person is especially meaningful. Over 500 community members participated at these workshops! It was incredible to see over 120 different families represented in person at these events, with so many of our industry and non-profit partner representatives there to support them as well.
This year we were excited to host five workshops across the U.S. Click on a video below to hear the voices and experiences of families and professionals who joined us at these workshops. This videos highlight the meaningful connections, shared stories, and lasting impact of bringing our community together!
Mountain Region
Morgan’s Wonderland
San Antonio, TX
Southeast Region
Wilderness at the Smokies Sevierville, TNWest Region
Point Defiance Zoo
Tacoma, WA
We were thrilled to once again provide our Sibling Camp for any brothers and sisters of patients with Dravet syndrome, aged 4-18. This opportunity allows them to connect with other kids who understand what it is like to live in a home where Dravet syndrome often dominates daily life. It’s not uncommon for siblings to experience anxiety or other challenging emotions due to the stress they face. Meeting others who share similar experiences can be deeply meaningful and impactful for them. At each workshop, they spent the morning doing Legos and getting to know each other, then in the afternoon they got to experience a fun activity together. Many of the kids were initially reluctant to leave their families to participate, but by the end of the day they were begging for more time with their new friends! We are incredibly grateful to the wonderful UCB volunteers who helped to make this camp possible and left such a meaningful impression on the over 60 siblings that participated across the five workshops.
Biocodex, one of our Platinum Sponsors this year, also provided a Lego set not only for each sibling, but also for the Dravet patients in attendance! Huge thanks to Biocodex for generously supplying over 150 Lego sets across the five workshops!
A special treat this year was the Camp Small Steps activity that was provided for our families on Saturday evening. Our partners at UCB really wanted our families to have a camp-like experience, but many would never be able to go to an actual camp or participate in outdoor activities. So camp was brought inside in a way that made it safe and accessible for everyone! There were tents, sand tables, canoes, fishing, crafts and a campfire sing-a-long that was so special! The amount of hard work and care that went into creating and executing these events was astounding. Our families were truly blown away by this amazing experience. We can’t even begin to convey to UCB how much Camp Small Steps meant to the parents and caregivers who got to see such joy on the faces of their children.
In addition to Camp Small Steps, UCB also provided the opportunity for our patient families to visit a local attraction, such as a zoo or amusement park, on the Sunday after the event. It was great to see families who may have just met the day before making plans to meet up the next day to spend more time together.
DSF could not provide this experience for our families without the support of our incredible industry partners! Because of their commitment to sponsor these workshops, there is minimal cost for families to participate. We are incredibly grateful to each of these companies and their many dedicated employees who show up in support of our families.
Day of Dravet workshops are held on the opposite years of the DSF Biennial Family & Professional Conference. Our next in person event will be the 2026 DSF Family & Professional Conference which will be in Orlando FL on June 25-27. We hope to see many of you there!
