Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
The transition from pediatric to adult health care providers is incredibly challenging for individuals with complex medical needs. DSF strives to promote research and the development of new tools to aid families in navigating the transition process. Just last year, DSF partnered with Dr. Danielle Andrade and the rest of the DSF Medical Advisory Board […]
ILAE Transition of Care Survey Read More »
Today’s blog post was created in collaboration with Tanya Brown, PhD the Science Director for TESS Research Foundation and was cross-posted to the Science Simplified Blog. Reading a scientific research article can be really daunting. Scientists who have studied a specific topic for many years are more likely to use “jargon” or very specific and
How to Read a Scientific Paper; Part 2: Breaking Down the Information 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 »
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 »
Today’s blog post was created in collaboration with Tanya Brown, PhD the Science Director for TESS Research Foundation and was cross-posted to the Science Simplified Blog. Have you ever wondered how to read a scientific paper? Reading a scientific paper, also called a research article, is different from reading a newspaper article. It can be
How to Read a Scientific Paper; Part 1: Anatomy of a Research Article Read More »
The American Epilepsy Society (AES) held its annual meeting on December 3-7, 2021. This was my first time attending the conference in person, as last year the event was only held virtually. I was really impacted by the vast amount of research focused on Dravet syndrome. For a rare disease, it is not mentioned rarely
2021 AES Meeting Recap Read More »
Last night at their annual Research Roundtable Meeting, the Dravet Syndrome Foundation (DSF) announced funding for five new research grants. DSF is pleased to be funding grants that focus on important topics for individuals with Dravet syndrome, including investigation of metabolic dysfunction, exploration of novel therapeutic targets for disease-modifying therapies, and exploration of changes to
DSF Announces Funding for Five New Research Grants Read More »
Thanksgiving is the perfect time to reflect on the year and what we are thankful for. While nobody’s life is perfect, those of us in the Dravet syndrome patient community definitely have our fair share of struggles and tough days. Sometimes it can be difficult to focus on the positive and have hope for the
I’m Thankful for DSF and the Dravet Community Read More »
SAVE THE DATE! We are so excited to announce that we are planning our 5th DSF Biennial Conference on June 23-25, 2022, in collaboration with Cook Children’s Medical Center in Fort Worth, Texas. We are looking forward to finally seeing our community back in person! This 3-day event is unique in that it is designed
2022 DSF Biennial Conference Read More »
Transition of care, or the process of moving from pediatric to adult health care providers, is one of the most challenging issues facing adults with Dravet syndrome and their families. Transition of care can be challenging in general when a patient has a complex medical history and requires a large team of health care providers
Dravet Syndrome Transition Guide Read More »
