From 2010-2015, Ciara’s Butterfly Bash annual fundraising gala was named in honor of DSF Founder Lori O’Driscoll’s daughter. In January 2017, Ciara passed away from SUDEP (Sudden Unexplained Death in Epilepsy). Ciara’s courage and positive attitude in fighting Dravet syndrome made her a symbol of hope and inspiration to countless others. Her perseverance and strength […]
2022 Ciara’s Spirit of Hope Nominations are Open! Read More »
After having to postpone our scheduled conference in 2020, we are excited to be able to gather face-to-face again this June in Fort Worth, Texas. From June 23rd to 25th we have a full schedule that you won’t want to miss! Here are 5 reasons you will want to be there: Educational opportunities. Nothing compares
Five Reasons to Attend the 2022 DSF Conference! Read More »
Our Patient Assistance Grant (PAG) program has been a part of our advocacy efforts since our inception in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers the opportunity for families to obtain some of the needed equipment for their child or adult living with Dravet
2022 Patient Assistance Grant Program is Now Open! Read More »
Our annual Give Up Your Cup virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to raise funds and spread awareness by setting up a personal fundraising page,
Give Up Your Cup for the Dravet Syndrome Community Read More »
Caregiver Appreciation Day is observed each year on the 3rd Friday in February. This year, on February 18th, we honor those who give endlessly of their time and energy to help their loved ones live better lives with Dravet syndrome, and we would like to draw attention to all that they do and sacrifice. We
Sending Encouragement on Caregiver Appreciation Day Read More »
A seizure is a medical emergency. A Seizure Action Plan (SAP) incorporates tailored guidelines on how to respond during a seizure. It includes patient-specific information that can assure quick and appropriate intervention. The second annual Seizure Action Plan Awareness Week, sponsored by the SAP Coalition, runs from February 14-18, 2022, with the intent to raise awareness
Seizure Action Plan Awareness Week 2022 Read More »
We are excited to announce the return of our in person biennial DSF Family & Professional Conference on June 23-25, 2022 at The Worthington Renaissance in Fort Worth, Texas. Special thanks to Dr. M. Scott Perry and Cook Children’s Medical Center for their collaboration and planning of this meeting. We invite all members of the
2022 DSF Conference Announcement Read More »
We are so proud of our community’s accomplishments in 2021 and we can’t wait to see what we are able to do in 2022. Even while we are facing the omicron variant and an increase in COVID cases at the time of this writing, our team is optimistic and hopeful that better days lie ahead
Three Things for the Dravet Community to Look Forward to in 2022! Read More »
Wanxuan comes from an ordinary family in China and was born in a city near the sea. There are three sisters in the family. She was the youngest, and her second sister was also autistic. We all love the sea. When did Wanxuan’s seizures begin? She had her first attack when she was almost six
The holidays are a time to be grateful. During this special time of year, it is also a time of great hope as we look ahead to 2022. This coming year holds the promise of new opportunities and exciting advances in the field of Dravet syndrome. While we expect there will be challenges, I know
Looking Forward With Gratitude and Hope Read More »
