Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

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 [...]

Newly Diagnosed Patient Kits

By |2021-09-15T10:56:30-05:00September 16th, 2021|Categories: DSF Programs|

Newly Diagnosed Patient Kits When a family first receives a diagnosis of Dravet syndrome for their child, they may feel overwhelmed and unsure where to begin. Often your first instinct is to turn to the internet for more information. But with a rare disease such as Dravet syndrome, general information you may find [...]

Dance for Dravet St. Louis

By |2021-09-15T09:43:43-05:00September 16th, 2021|Categories: Events|

Dance for Dravet Join us for a night of fun & fundraising at Dance for Dravet in Honor of Anna. Taking place at Third Degree Glass Factory in St. Louis, Missouri, the evening includes appetizers, dinner, drinks, dancing, and silent and live auctions. Tickets are now on sale for $100 per person. Purchase [...]

Day of Dravet Registration

By |2021-09-15T09:43:53-05:00September 16th, 2021|Categories: DSF Programs|

2021 Day of Dravet Registration is Open Join the DSF Family Network for our 5th annual Day of Dravet workshops this October! DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of [...]

Surgery & Procedures

By |2022-01-21T05:19:36-05:00September 16th, 2021|Categories: Research / Treatments|

Surgery & Procedures in Dravet Syndrome 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 [...]

Strategic Plan Update

By |2021-09-15T09:44:32-05:00September 16th, 2021|Categories: DSF Programs|

2020-2021 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]

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 [...]


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