A Light at the End of the Tunnel

By |2019-05-30T16:49:11-05:00May 31st, 2019|Categories: Decoding Dravet Blog|

This week's guest blog post comes from Ashley Kerns. Ashley resides with her 3 children and furbaby in Lake Charles, Louisiana. Her daughter was recently diagnosed with Dravet Syndrome earlier this year. Ashley works at her family’s marine construction business, Mike Hooks, LLC. When she isn’t busy being mommy, Ashley enjoys running and traveling. Her [...]

Facebook Live Sessions: June 17-23, 2019

By |2019-06-01T12:09:32-05:00May 30th, 2019|Categories: Uncategorized|

Schedule All sessions begin at 8pm ET Date Presentation Monday, June 17 Learn about the programs and patient community that make up DSF  - Includes an overview of Dravet syndrome and a live Q&A Tuesday, June 18 Learn about programs & tools that can help you manage living with Dravet syndrome - Includes a [...]

Add a Facebook Frame

By |2019-05-31T08:39:59-05:00May 30th, 2019|Categories: Uncategorized|

Add a DSF Facebook Frame to your profile picture to help raise awareness! The 2019 awareness frames are available at these links: www.facebook.com/profilepicframes/?selected_overlay_id=2059001997736675 www.facebook.com/profilepicframes/?selected_overlay_id=731750760573867 www.facebook.com/profilepicframes/?selected_overlay_id=455767508327043 www.facebook.com/profilepicframes/?selected_overlay_id=365125517685743 www.facebook.com/profilepicframes/?selected_overlay_id=455767508327043 www.facebook.com/fbcameraeffects/tryit/467068077376266/ (for Facebook stories) To find all past & current frames: Go to facebook.com/profilepicframes. Click your profile picture in the bottom left and select your Page. Search for [...]

Get Connected

By |2019-05-30T20:44:18-05:00May 30th, 2019|Categories: Uncategorized|

Get Connected with DSF on our social media channels Then watch each day in the month of June for our Not Today Dravet posts and share to raise awareness! Facebook:  @DravetSyndromeFoundation Twitter:  @curedravet Instagram:  @dravetsyndromefoundation YouTube:  https://www.youtube.com/channel/UC4z8dwjuGJc3hMLyGuk8xhw

#MemberMonday

By |2019-05-17T13:34:14-05:00May 27th, 2019|Categories: Our Community, Uncategorized|

Meet West Coast Parent Ambassador, Morgan Turpin! This #MemberMonday meet West Coast Parent Ambassador: Morgan Turpin! Morgan lives just north of San Diego with her husband Sean and their son and daughter. Their oldest, Shayne (now 6), was diagnosed with a mutation in the SCN1A gene when he was fourteen months old. It would [...]

Day of Dravet Regional Workshops

By |2019-05-20T16:37:36-05:00May 24th, 2019|Categories: Decoding Dravet Blog|

Save the Date for the 2019 Day of Dravet Workshop near you! Recognizing that it was often difficult and/or too expensive for families to travel to DSF's family & professional biennial conference, we wanted to offer another educational opportunity that would be easier for our community to access. In 2017, as an offshoot [...]

#MemberMonday

By |2019-05-17T13:34:36-05:00May 20th, 2019|Categories: Our Community, Uncategorized|

Meet Mountain Region Parent Ambassador, Gloria Rodriguez! This #MemberMonday meet Mountain Parent Ambassador Gloria Rodriguez! Gloria lives in Pasadena, TX with her husband Ascension and two daughters Madlyn (16) and Grace (5). Grace was diagnosed with Dravet syndrome at 14 months old after a genetic test confirmed an SCN1A gene mutation. Gloria and her [...]

Building Your Child’s Team of Medical Professionals

By |2019-05-13T06:57:04-05:00May 17th, 2019|Categories: Decoding Dravet Blog|

Your relationship to your child’s medical team has everything to do with their health and well-being. For many years, patients and families affected by Dravet syndrome (DS) felt alone and unheard. They struggled finding medical specialists who could not only recognize and diagnosis the disease, but also knew the best ways to approach [...]

Free Testing

By |2019-05-15T10:18:57-05:00May 15th, 2019|Categories: Research / Treatments|

Behind the Seizures Expansion BioMarin, Invitae, Stoke Therapeutics, and Xenon Pharmaceuticals recently announced the expansion of Behind the Seizures. Previously available to patients ages 2-4 years, the program has expanded to offers Invitae's comprehensive epilepsy panel at no cost to any child up to 60 months who has had an unprovoked seizure. More [...]

Save the Date!

By |2019-05-15T10:16:13-05:00May 15th, 2019|Categories: DSF Programs|

2019 Day of Dravet DSF's Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF's shared vision for a better outcome for those affected by Dravet syndrome. Participants come away [...]