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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 [...]

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 [...]

How to Read a Scientific Paper; Part 1: Anatomy of a Research Article

By |2021-12-17T20:54:41-05:00December 17th, 2021|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. 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 [...]

2021 AES Meeting Recap

By |2021-12-10T11:21:18-05:00December 10th, 2021|Categories: Decoding Dravet Blog|

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 [...]

DSF Announces Funding for Five New Research Grants

By |2021-12-02T08:59:38-05:00December 3rd, 2021|Categories: Decoding Dravet Blog|

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 [...]

I’m Thankful for DSF and the Dravet Community

By |2021-11-24T13:41:47-05:00November 26th, 2021|Categories: Decoding Dravet Blog|

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 [...]

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