ENVISION: A 2-year observational study of Dravet syndrome

By |2020-09-17T22:26:32-05:00September 18th, 2020|Categories: Decoding Dravet Blog|

The Dravet syndrome community has long been awaiting gene therapy approaches to provide true disease-modifying treatments. We now watch optimistically as new therapies are in final stages of pre-clinical development or are beginning early-phase clinical trials. One of the challenges of these types of gene-based therapies entering human clinical trials is that a placebo-control approach [...]

Share the Patient Voice – Epilepsy Research Benchmarks

By |2020-09-10T16:19:06-05:00September 11th, 2020|Categories: Decoding Dravet Blog|

Twenty years ago, in March 2000, the National Institute of Neurological Disorders and Stroke (NINDS) along with the American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE), the Epilepsy Foundation, and the National Association of Epilepsy Research Centers co-sponsored a White House initiated conference, Curing Epilepsy: Focus on the Future. One of the [...]

EpyGenix Launches Phase II Trial for EPX-100

By |2020-09-07T00:12:10-05:00September 4th, 2020|Categories: Decoding Dravet Blog|

EpyGenix Therapeutics, in partnership with Greenlight Clinical, is currently enrolling a Phase II, multicenter, randomized, double-blind, placebo-control clinical trial for EPX-100 (Clemizole Hydrochloride, oral solution) in children diagnosed with Dravet syndrome. In January 2020, Epygenix announced the completion of Phase I trials for EPX-100, establishing the safety of EPX-100 in healthy subjects and clearing the [...]

Free Concert Event – Joey’s Song!

By |2020-08-26T18:00:05-05:00August 28th, 2020|Categories: Decoding Dravet Blog|

DSF is honored to partner with Joey’s Song for this year’s Remote & Uncontrolled virtual concert. Mark your calendars and tune in to our webpage at 7:50pm est on Wednesday, September 16th! Our evening will begin with a welcome from DSF, followed by the live stream of the concert. Tune in for this free event, [...]

DSF Strategic Plan 2020 Update

By |2020-08-17T14:29:48-05:00August 21st, 2020|Categories: Decoding Dravet Blog|

Strategic planning for a nonprofit organization such as the Dravet Syndrome Foundation (DSF) is an important investment of time and resources that provides enormous benefits. It brings clarity and agreement on the organization’s mission and allows preparation for the future. When a community is focused on the same outcomes, they become invested in a common [...]

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 [...]

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