Tell us about yourself and the Dravet patient in your life For 18 years we have fought Dravet syndrome. Tristin had his first official seizure at 4 months old. Looking back though, I believe he was having seizures much earlier. Dravet syndrome has not stopped us from living. We camp, do coastal visits and go […]
DSF is pleased to share information about a new free platform developed by UCB, with input from the Dravet syndrome and Lennox-Gastaut syndrome patient communities: Developed with caregivers, for caregivers, CareCompass is now available for families and caregivers of individuals with Dravet syndrome. This digital care platform is designed to simplify the caregiving journey and
CareCompass: A New Resource to Navigate Caregiving Read More »
VuMedi is a private video education platform for doctors. Over 450,000 doctors use VuMedi to improve patient care and grow their practice. DSF is excited to have received an invitation to partner with VuMedi, sharing educational videos from our archives to support healthcare professionals in diagnosing and caring for patients with Dravet syndrome.
At DSF, we understand that keeping up with the quickly evolving changes happening right now can feel overwhelming as you try to determine what the impacts could be on your loved one with Dravet syndrome. We are committed to keeping our patient community informed about legislative actions affecting Medicaid and rare disease research, which are
As we embark on a new year, I encourage you to make the most of your involvement with DSF by exploring the various programs and engagement opportunities available in 2025. Remember our tagline: Community. Research. Progress. DSF offers something for everyone in our community, providing plenty of ways to get involved and make a difference!
Engaging with DSF in 2025 Read More »
We are excited to share some recent changes to our staff with the community! Melissa O’Bryan is joining our team as our new Administrative Assistant. Melissa is a proud wife and mom of four boys: Conner, Dylan, Owen and Grady. Her son, Owen, had his first seizure when he was six months old which eventually
Staff Changes at DSF Read More »
At the end of each year, I, along with our Board of Directors, conducts a comprehensive review of our strategic priorities for the upcoming year, ensuring they are in alignment with our long-term goals outlined in our current 5-year Strategic Plan. This review includes assessing current progress, identifying key challenges, and determining new objectives that
2025: New Year, New Opportunities Read More »
This year there has been remarkable for progress and impact in the field of Dravet syndrome – a fantastic way to mark DSF’s 15th anniversary! Thanks to the collective dedication of our community and the generosity of our supporters, we have several major accomplishments to celebrate in 2024: We hosted our 6th DSF Family &
The Year in Review and Looking Ahead to 2025 Read More »
Tell us about yourself and the Dravet patient in your life I am one of the founding members of the Dravet Syndrome Foundation (DSF) and have had the privilege of serving as the Executive Director since 2012. This cause is deeply personal to me, as my youngest son, Elliot, is living with Dravet syndrome. Although
The Elliot Meskis Award for an Exceptional Postdoctoral Fellow honors the achievements and potential of remarkable postdocs specializing in Dravet syndrome. Recipients are awarded $2,500 to support their career advancement. This annual award is presented as part of the DSF Research Grant cycle, granted to one of the postdoctoral fellowships selected as awardees for that
Elliot Meskis Award for an Exceptional Postdoctoral Fellow Read More »
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