2021 Dance for Dravet

By |2021-09-23T17:58:50-05:00September 24th, 2021|Categories: Decoding Dravet Blog|

We are excited to be hosting our first in-person event since the start of the pandemic! The Brennan Family will host their third annual Dance for Dravet, on Friday October 22, at the Third Degree Glass Factory in St Louis, Missouri. The event is held in honor of their 4-year-old family member Anna Odlaug, who [...]

2021 Day of Dravet – Featuring Experts from Our Community!

By |2021-09-16T12:12:29-05:00September 17th, 2021|Categories: Decoding Dravet Blog|

As mentioned in last week’s blog post we are very excited for this year’s Day of Dravet workshops which will consist of 5 sessions focused on topics important to caregivers. There will be a session held each Saturday of October, running from 12-3pm ET. We are excited to be pulling in many experts from our [...]

Brain First Parenting approach – a reflection from our newest staff member

By |2021-09-09T09:42:16-05:00September 10th, 2021|Categories: Decoding Dravet Blog|

It is such a pleasure to be a Guest Blogger this week! I am thrilled to be blogging as the newest member of the DSF Team, proudly serving as the Family Network Support Group Liaison. I’m here to first introduce myself and share a little bit about my family. I’ll close by sharing my [...]

Strategic Plan Progress Report – Year 3

By |2021-08-31T15:59:47-05:00September 3rd, 2021|Categories: Decoding Dravet Blog|

A strategic plan for a nonprofit acts as a blueprint to focus on what direction the organization will move in. It brings together the organization’s mission and strategy to help its constituents better understand what its priorities are and how they will be achieved. It also allows the organization the opportunity to evaluate its progress, [...]

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, [...]

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 [...]

Is epilepsy surgery for seizure control an option for individuals with Dravet syndrome?

By |2021-07-28T14:20:32-05:00July 30th, 2021|Categories: Decoding Dravet Blog|

DSF has received many questions about epilepsy surgery for patients with Dravet syndrome recently. If this is something you are considering for your child, it is crucial to know your options and to learn more about what we currently know regarding surgery for patients with Dravet syndrome. It is important to remember that every patient’s [...]

The VIP Sibling Project

By |2021-08-05T10:28:14-05:00July 23rd, 2021|Categories: Decoding Dravet Blog|

All rare epilepsy families face challenges. Caring for a child with a rare epilepsy requires considerable energy, time, and flexibility. And that constant care has an impact on every member of the family. Siblings who have a brother or sister with a rare epilepsy are often unselfish, dedicated, and demonstrate an amazing ability to see [...]

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