Day of Dravet Virtual Workshop – October 17, 2020

By |2020-08-13T17:39:42-05:00August 14th, 2020|Categories: Decoding Dravet Blog|

Each fall, the Dravet community looks forward to DSF’s Day of Dravet regional workshops. As a part of our Family Network program, DSF usually hosts five workshops each fall across the U.S. to bring our community together in person to learn about the latest in Dravet syndrome, connect with one another, and be a part [...]

Back to School Anxiety in the Dravet Community

By |2020-08-06T09:31:28-05:00August 7th, 2020|Categories: Decoding Dravet Blog|

While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. They miss their routine, their therapies, and the opportunity for socialization. Parents who have had to step in as “teacher and therapist” during distance learning often report that they are [...]

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 |2020-07-23T16:35:58-05:00July 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 [...]

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 |2020-07-03T12:15:02-05:00July 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, [...]

FINTEPLA® Receives FDA Approval for Treatment in Dravet Syndrome

By |2020-06-26T07:46:18-05:00June 25th, 2020|Categories: Decoding Dravet Blog|

On June 25th, 2020, the FDA announced approval of FINTEPLA® (fenfluramine) oral solution, CIV for the treatment of seizures associated with Dravet syndrome in patients 2 years of age and older. In two Phase 3 placebo-controlled clinical trials FINTEPLA demonstrated significant reductions in convulsive seizure frequency in patients whose seizures were not adequately controlled on [...]

Stoke Therapeutics Launches MONARCH Study

By |2020-06-18T11:02:46-05:00June 18th, 2020|Categories: Decoding Dravet Blog|

The most common cause of Dravet syndrome is a genetic mutation in the SCN1A gene that results in a reduction in a type of sodium channel (Nav1.1) in the brain. A new type of medicine, STK-001, designed by Stoke Therapeutics increases healthy copies of the Nav1.1 sodium channel in pre-clinical animal and cell models. Stoke [...]