Sarah joined the DSF staff in 2025 but has been involved with the organization as a supporter since around 2015 after she learned that her daughter’s best friend had an SCN1A related seizure disorder. She has her undergraduate degree in Theatre and her Masters of Science in elementary and special education. Sarah lives in New […]
Sarah Pasternak – Database Coordinator Read More »
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 website is made possible through educational grants from our partners. Partners did not have a role in developing content. The information you obtain at this site is not intended to be medical advice, please read our medical disclaimer. Thank you to:
This website is neither intended nor designed to record or report safety information related to any product or device. If you have experienced an adverse event (side effect) or product quality complaint with any product or device, please contact your doctor and contact the manufacturer directly.
© Copyright 2025 | Dravet Syndrome Foundation | All Rights Reserved
