Decoding Dravet Blog

This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF: 15 years of funding groundbreaking research.  15 years of connecting and supporting families. 15 years of raising awareness of Dravet […]

I wanted to take the opportunity to express my heartfelt gratitude to our Finance and Program Director, Jamie Cohen, as she celebrates her 10-year anniversary with DSF on November 10, 2024. This milestone is a testament to her dedication, hard work, and unwavering commitment to our team, our community, and our mission. Jamie first joined

DSF has launched a Legislative Advocacy Program and now is the time for our community to get involved! You may feel like there is nothing that happens in Washington, D.C. that benefits your family, but that is not the case! There are quite a few pieces of legislation pending in Congress that can have a

While celebrating with friends and family last year on Christmas Eve, I received news that our daughter, Eden (10 year old Dravet warrior), would lose access to the medication that was her miracle. I remember the immediate panic attack like it was yesterday. What was this going to mean for our Dravet warrior who at

DSF has recently launched a Caregiver Stories page on our website to assist families affected by Dravet syndrome in learning from one another’s experiences. By sharing your story, we can broaden our support network and enhance our patient community. Your insights can benefit other families in numerous ways: Community Support: It fosters a sense of

We are proud to be participating in the first-ever DAF Day: a new day of giving designed to educate and inspire individuals to donate through their Donor Advised Funds. What Is a Donor Advised Fund (DAF)? A donor advised fund (DAF) is a charitable savings account that gives you the flexibility to recommend grants to

Planning long-term care for a loved one with rare epilepsy or a developmental and epileptic encephalopathy (DEE), such as Dravet syndrome, can sometimes feel overwhelming. It’s natural to experience concern or anxiety as you plan for their future. Recently, DSF had the opportunity to work with UCB, along with the LGS Foundation, TSC Alliance, and

Supporting any of DSF’s T-shirt fundraisers can be a powerful way to make a difference. Each year, we organize two fundraisers: one to engage the community for Dravet Syndrome Awareness Month in June, and a second to raise awareness for Epilepsy Awareness Month in November.  This year we are excited to debut a design celebrating

Research advancements have led to improvements in clinical care and the development of novel treatments for Dravet syndrome (DS). Despite being rare, DS is one of the most well-studied genetic epilepsies. DSF and the Dravet community have played a large part in these advancements. DSF’s ability to fund over $9 million in research has only

This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF: 15 years of funding groundbreaking research.  15 years of connecting and supporting families. 15 years of raising awareness of Dravet