Jane lives in Tulsa, Oklahoma and loves music and going to the lake. She loves books and dancing and hugging everyone! When did Jane’s seizures begin? 5 1/2 months was her first seizure. We were told it was probably a one time thing but then it happened again… and again… and again. We finally had […]
Tell us about yourself and the Dravet patient in your life At 29, Jake is among the growing group of adults with a diagnosis of Dravet syndrome. Our family is in the unique position of having almost three decades of experience of life with Dravet, and we share our story with hope that others will
Arianna lives in Texas with her parents and older sister. She loves music and likes to sing and dance. She also enjoy playing with her toys and swinging. When did Arianna’s seizures begin? Her seizures started the day after she turned 6 months old. The first two years she was hospitalized at least once a
Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease. Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of Dravet syndrome for inclusion on
2021 Dravet Remembrance Wall Read More »
We have several versions of Facebook Frames available for our 2021 Dravet Syndrome Awareness Month, encompassing our theme of JOIN THE FIGHT! Click here to view available facebook frame designs
2021 Join the Fight Facebook Frames Read More »
Receiving a diagnosis of Dravet syndrome is devastating. All the dreams and hopes you have for your child and family are suddenly turned upside down, leaving you with uncertainty and fear of the unknown. Once things begin to settle after diagnosis, we frequently hear from parents that they feel that they are often the expert
New Resource for your Child’s Healthcare Team Read More »
Our caregiver community has been anxious to learn about the experiences of patients with Dravet syndrome who have received the COVID-19 vaccination. Our friends at Dravet Syndrome UK (DSUK) recently surveyed their community to gather information on the patient experience after vaccination. They have been kind enough to share this with us in the guest
As a Dravet parent or caregiver, have you ever thought about the term “reframing?” This week’s guest blog post comes from Barbara Swoyer, who recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine. In this piece, Barbara incorporated the thoughts of others in the Dravet community about what reframing
Finding Resilience Through Reframing: Parents’ Perspectives Read More »
On February 1, 2020, the Seizure Action Plan (SAP) Coalition launched its new website at www.seizureactionplans.org. This new website offers information and resources for for patients, professionals, and advocacy organizations to learn about and spread awareness of: what a Seizure Action Plan (SAP) is the importance of a SAP in the health management of those
Seizure Action Plan Awareness Week Read More »
As we roll into 2021, I wanted to remind our community of the many important resources that DSF offers to help patient families on this complex medical journey. We recognize that you deal with a lot each day and DSF is here to help. Brief overviews on each program can be found below or you
DSF Programs & Resources for Patient Families Read More »
