Surgery & Procedures in Dravet Syndrome

By |2021-08-25T09:41:06-05:00August 27th, 2021|Categories: Decoding Dravet Blog|

Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube placement (i.e., g-tube, j-tube), VNS (vagus nerve stimulator) [...]

Join us for our 5th annual Day of Dravet workshops this October!

By |2021-08-16T16:55:12-05:00August 20th, 2021|Categories: Decoding Dravet Blog|

Each fall, DSF typically hosts five Day of Dravet regional workshops 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 of a DSF’s shared vision for better options and outcomes for affected individuals and their families.  This year, [...]

COVID-19 Vaccine Survey Results

By |2021-08-16T07:52:34-05:00August 16th, 2021|Categories: Research / Treatments|

Dravet Syndrome and COVID-19 Vaccination As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common [...]

Community Spotlight

By |2021-08-17T15:05:35-05:00August 16th, 2021|Categories: Our Community|

Meet Dan Hartley, his daughter Bri, and McCall! In this Community Spotlight meet Dan Hartley and learn about his new multi-year fundrasising and awareness event – Miles for McCall! Dan Hartley is a 49-year-old, US Navy Veteran and business owner, who is a former semi-professional ultra-runner who has competed in numerous ultramarathons and 100-mile [...]

Virtual Steps Toward a Cure

By |2021-08-12T08:26:36-05:00August 16th, 2021|Categories: Events|

Steps Toward a Cure Virtual Walk Mark your calendars and join DSF for our virtual Steps Towards a Cure event! In place of our annual walk and race events we have put together a virtual 1 mile walk, family stroll, or run across the United States that everyone can participate in! Register now [...]

Adult Neurology Training

By |2021-08-16T11:19:57-05:00August 16th, 2021|Categories: Research / Treatments|

Education Participation Survey There is currently suboptimal exposure to Dravet syndrome in adult neurology training. We believe exposure to Dravet syndrome should be optimized in adult neurology residency training since adult providers will be caring for adults with Dravet. In an attempt to address this educational gap, DSF invites you to join an [...]

Dravet Syndrome and COVID-19 Vaccination

By |2021-08-13T01:15:21-05:00August 13th, 2021|Categories: Decoding Dravet Blog|

As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common seizure trigger in this disorder. Early childhood [...]

Super Siblings Sessions

By |2021-08-07T11:30:50-05:00August 7th, 2021|Categories: Uncategorized|

Our Super Siblings Sessions will take place each Saturday in October from at 12:00pm-1:30pm ET. While parents and caregivers are attending the Day of Dravet sessions, Laurie Bailey from Zogenix will host our Super Sibling sessions to bring our amazing siblings together to connect and of course, have lots of fun! Siblings will have the [...]

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