Decoding Dravet Blog

As our community knows, rare diseases don’t receive as much attention from researchers or funders like diseases that affect larger populations. Most people do not know about Dravet syndrome unless they are directly connected to it in some way. This is why DSF works so hard to raise awareness about Dravet syndrome, and why we […]

We are excited to welcome our three new board members who began their 3-year term of service on April 15, 2022. Learn more about them below and join us in welcoming them to #teamDSF! Nathan Batt Nathan lives in Atlanta, Georgia with his wife Whitney, and his two sons: Cooper 5 and Colton 3.  Cooper

DSF is excited to be hosting its 2nd butterfly release, Wings of Hope, on June 25, 2022. This butterfly release will honor those living with Dravet syndrome, celebrate hope, and remember those who have passed. The release will take place on the last day of our 2022 Conference – June 25th – at The Worthington

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

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

In today’s blog we are recapping a recent publication by Cohen et al that reported the results of a study aimed at better understanding the relationship between quality of life and other measures of health and well-being in individuals with severe genetic developmental epilepsies (called developmental and epileptic encephalopathies, or “DEEs”). The Dravet Syndrome Foundation

What is soticlestat? Soticlestat is an investigational medication that is currently in Phase 3 trials for the treatment of seizures in Dravet syndrome (1). Soticlestat works differently than any other current anti-seizure medications. Soticlestat blocks a molecule called ‘cholesterol 24-hydroxylase’ or ‘CH24H’, an important part of the pathway that processes cholesterol in the brain (2).

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

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,