Jim is married with two daughters and three grandchildren. His grandaughter began having seizures at 9 months old and was eventually diagnosed with an SCN1A-related disorder. After retiring from his property management business several years ago, Jim welcomed the opportunity to join the DSF team, after witnessing first hand the level of commitment this organization […]
Jim Hann – Shipping & Supplies Read More »
Mike lives in San Francisco, CA with his wife Kira and their daughter Mila – who has Dravet syndrome. Mila was diagnosed in November 2023, after prolonged, intractable seizures at daycare. Despite Dravet Syndrome, Mila is a charismatic and curious two year old who delights in learning, exploring, and driving the family cat, Petunia, crazy
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 »
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