Upcoming EL-PFDD Meeting February 3rd!

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2022 DSF Conference Announcement

By |2022-01-27T15:02:19-05:00January 28th, 2022|Categories: Decoding Dravet Blog|

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 [...]

ILAE Transition of Care Survey

By |2022-01-21T00:51:53-05:00January 21st, 2022|Categories: Decoding Dravet Blog|

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 [...]

Parent Ambassadors

By |2022-01-17T08:37:22-05:00January 17th, 2022|Categories: DSF Programs|

Apply to be a Parent Ambassador! In 2010, our Dravet Syndrome Foundation founding members established our first online support group. What started with roughly 100 members in the first few months has now grown to over 3,000 members as of January 2022! In 2017, we launched the DSF Family Network (DSFFN). We created [...]

Join the EL-PFDD Meeting

By |2022-01-24T05:15:56-05:00January 17th, 2022|Categories: Research / Treatments|Tags: |

Particpate in the EL-PFDD on Dravet Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on Dravet Syndrome EL-PFDD meetings bring together patients and caregivers, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. DSF will be hosting a virtual EL-PFDD on Dravet syndrome on [...]

Birthday Fundraisers

By |2022-01-17T08:38:06-05:00January 17th, 2022|Categories: Our Community|

2021 Facebook Birthdays We set ourselves a sizable goal in 2021 of raising $100K for Facebook Birthdays! Thanks to everyone that used their birthday as a way to spread awareness and raise funds. While we were just shy of reaching our $100k goal, over 300 individuals still raised an incredible $96k!!! Every gift, [...]

Researcher Spotlight

By |2022-01-17T12:12:29-05:00January 17th, 2022|Categories: Our Community|

Meet Scott Baraban, PhD In this Researcher Spotlight meet DSF’s Scientific Advisory Board (MAB) member, Scott Baraban, PhD. Dr. Baraban studies Dravet syndrome using zebrafish, and his laboratory’s work has led to advancements in drug discovery and repurposing for Dravet syndrome. DSF funded Dr. Baraban’s zebrafish drug screens through our grants program in 2011, and [...]

Researcher Spotlight

By |2022-01-17T12:11:22-05:00January 17th, 2022|Categories: Our Community|

Meet Elaine Wirrell, MD In this Researcher Spotlight meet DSF's Medical Advisory Board (MAB) member, Elaine Wirrell, MD. Dr. Wirrell is passionate about improving the lives of children with epilepsy, appreciating the tremendous impact this condition has on the entire family, and the critical importance of addressing seizures and comorbidities. Last month, Dr. [...]

How to Read a Scientific Paper; Part 2: Breaking Down the Information

By |2022-01-14T02:15:00-05:00January 14th, 2022|Categories: Decoding Dravet Blog|

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 [...]

Three Things for the Dravet Community to Look Forward to in 2022!

By |2022-01-06T18:32:01-05:00January 7th, 2022|Categories: Decoding Dravet Blog|

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 [...]

Meet Wanxuan

By |2022-01-06T14:28:02-05:00January 6th, 2022|Categories: Dravet Stories|

About Wanxuan 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 [...]

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