Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

Taking Steps Toward a Cure

By |2020-07-30T16:27:33-05:00July 31st, 2020|Categories: Decoding Dravet Blog|

Since 2009, DSF Steps Toward a Cure walks have gathered the Dravet community to unify our voices, increase awareness about Dravet syndrome and generate support for those who suffer from its potentially devastating challenges. Funds raised at these events have helped DSF to fund over $4.6M in research and over $160K in Patient Assistance Grants [...]

Sustaining Telehealth Beyond the COVID-Era

By |2021-08-10T09:51:57-05:00July 24th, 2020|Categories: Decoding Dravet Blog|

I often reflect on the amount of time spent traveling to and from the numerous doctor and therapy appointments with my son over the years. Negotiating my work schedule, coordinating school and therapy schedules, packing medical equipment and medicines, loading my son and his wheelchair into the car, making the sometimes-long drives to the clinic, [...]

Lessons Learned: The Importance of the Patient Voice

By |2020-07-15T11:12:48-05:00July 17th, 2020|Categories: Decoding Dravet Blog|

Patient-Centered Outcomes Research (PCOR) is research that provides patients and their clinicians with evidence-based information in order to help them make more informed healthcare decisions. It also gives patients the opportunity to express what is most important to them and answer questions about the potential benefits and harms of different care options, given a patient’s [...]

Parent & Sibling Resource Kits

By |2021-03-15T14:30:53-05:00July 15th, 2020|Categories: DSF Programs|

New Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to [...]

New Staff Member

By |2020-07-15T13:04:56-05:00July 15th, 2020|Categories: Our Community|

Meet our new Research Coordinator, Veronica Hood, PhD! Welcome to Our New Staff Member! We are so excited to welcome Veronica Hood, PhD, to DSF as our new Research Coordinator. Veronica has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the University [...]

MONARCH Study Phase 1/2a

By |2020-07-15T13:08:01-05:00July 15th, 2020|Categories: Research / Treatments|

Stoke Therapeutics Launches MONARCH Study The MONARCH Study, conducted by Stoke Therapeutics, is currently enrolling for a Phase1/2a trial of STK-001. This new therapeutic medicine acts to specifically increase the number of healthy sodium channels (Nav1.1) that are impacted by mutations in SCN1A gene, the most common cause of Dravet syndrome. The study [...]


By |2020-07-15T13:04:24-05:00July 15th, 2020|Categories: Research / Treatments|

FINTEPLA® Receives FDS Approval for Treatment in Dravet Syndrome On June 25,2020, the FDA approved FINTEPLA® (fenfluramine) oral solution for the treatment of seizures in Dravet syndrome for patients 2 years and older. As part of the approval, the FDA required a black box warning on the medication. Additionally, the FDA requires the [...]

What is Special about a Specialty Pharmacy? A Tour of AnovoRX

By |2020-07-08T12:06:52-05:00July 10th, 2020|Categories: Decoding Dravet Blog|

While many of the families in the Dravet syndrome community obtain one or more of their child’s medications (such as Diacomit or Epidiolex) by mail from a specialty pharmacy, other families are not familiar with specialty pharmacies and the services they offer. A specialty pharmacy supplies medications for rare, complex, and/or chronic conditions, and offers [...]

Guest Blog Post: Parting with Predictibility

By |2021-03-01T10:29:50-05:00July 3rd, 2020|Categories: Decoding Dravet Blog|

Today's Guest Blog Post comes from Joy Segovia. Joy is a freelance science and copy writer based in Oregon. She studied neuroscience and anthropology at Bowdoin College and spent over ten years working in behavioral health and educational settings prior to ditching the commute to homeschool her children and care for her youngest daughter, Adelina, [...]


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