Click this link to open the profile template. Note: If you do not have a Canva account, you will need to create a free account here to continue. Select “Use template for new design” Select “Uploads” on the left-hand side and “upload file” or drag and drop the image you’d like to make your profile […]
Create a Custom Social Media Profile Picture Read More »
DSF is proud to announce that it has once again received the Platinum Seal of Transparency from Candid, the highest level of recognition offered by the nonprofit information platform formerly known as GuideStar. This prestigious designation underscores DSF’s ongoing commitment to transparency, accountability, and trustworthiness. Candid’s Seals of Transparency – Bronze, Silver, Gold, and Platinum
DSF Receives Platinum Nonprofit Seal of Excellence Read More »
Caring for a loved one with Dravet syndrome can lead to significant medical expenses. We understand that the need for support can arise at various stages, and we’re here to help when it does. The DSF Patient Assistance Grant (PAG) Program is designed to help by providing financial aid for essential medical equipment, ensuring patients
Helping Families Manage the Cost of Care Read More »
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
