Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

The importance of sharing the patient and family experience with Dravet syndrome

By |2020-04-06T15:03:33-05:00September 27th, 2019|Categories: Decoding Dravet Blog|

Your personal experience is an important resource that offers valuable insight into the patient journey and the needs of the Dravet syndrome (DS) community. While each of us has a compelling story to tell, the decision to share your story is a very personal one. There are two important but very different ways that you [...]

2019 Epilepsy Precision Medicine Conference – A Parent’s Perspective

By |2020-04-06T14:38:11-05:00September 20th, 2019|Categories: Decoding Dravet Blog|

I had the opportunity to attend the Epilepsy Precision Medicine Conference in the Washington, DC, area this week, where DSF was one of the event sponsors. This two-day conference was the second chapter to an initial meeting that took place in 2014. The goal of the meeting was to bring together experts with a vested [...]

Strategic Plan Update

By |2020-08-17T14:19:35-05:00September 18th, 2019|Categories: DSF Programs|

2018-2019 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 [...]

Double Down Philadelphia

By |2019-10-18T14:13:33-05:00September 15th, 2019|Categories: Events|

2019 Double Down for Dravet: Philadelphia Join us for a night of fun & fundraising at Double Down for Dravet: Philadelphia Taking place at Mitten Hall at Temple University, the evening includes appetizers, dinner, drinks, 3 hours of casino games, silent and live auctions. Tickets are now on sale for $100 per person. [...]

Caregiver Connect Grants

By |2019-09-13T11:43:32-05:00September 15th, 2019|Categories: DSF Programs|

Mid-Atlantic Meet & Greet Dravet families in Virginia met for a meet and greet on August 3 to connect and share their stories and experiences. It reaffirmed that they are not alone, and that the Dravet Syndrome Foundation (DSF) was a valuable resource in supporting families and patients. Interested in setting up a [...]

Breastfeeding Research Survey

By |2019-09-13T11:45:31-05:00September 15th, 2019|Categories: Research / Treatments|

Breastfeeding Research Survey Dr. Douglas Nordli and colleagues at The University of Chicago are conducting a study on Breastfeeding and its impact in Dravet syndrome. This research project aims to find the association between breastfeeding practices and age of onset, severity, morbidity and mortality in patients with Dravet syndrome. This non-interventional, anonymous study [...]

Thank You Aaron Family!

By |2019-09-13T11:54:07-05:00September 15th, 2019|Categories: Our Community|

Aaron Family Raises Over $16,000 Jeff Aaron and his wife, Karina (a Sergeant and a Detective for the Chicago Police Department) are one tough team. They have stepped up to the plate to raise funds and awareness for the Dravet Syndrome Foundation in honor of their son, Jackson, who is now 5 years [...]

When There are Problems with Your Child’s IEP

By |2020-04-06T14:46:01-05:00September 13th, 2019|Categories: Decoding Dravet Blog|

In last week’s blog, I shared an overview of the IEP process. But, what if you are concerned that promised services and supports are not being provided? It is important to remember that your child’s Individualized Education Program (IEP) is a binding document between the school district and the parents. And while the IEP is [...]

Dravet syndrome and parkinsonism: A case report investigating the dopaminergic system

By |2019-09-09T17:20:38-05:00September 9th, 2019|Categories: DSF Research Review|Tags: , , |

This paper was interesting because one doesn't see too many reports focused on adult Dravet patients. It has been found that Parkinsonism is a motor condition that often develops in adults with Dravet syndrome. However, it is not well understood how Dravet syndrome, in particular dysfunction of the NaV1.1 sodium channel, is connected to [...]

The ABCs of IEPs – Learning the Basics

By |2020-04-06T14:49:18-05:00September 6th, 2019|Categories: Decoding Dravet Blog|

As our children head back to school this fall, many of our families may be participating in their annual, or even their first, Individualized Education Program (IEP) meeting for their child. If you are new to the IEP process, it can seem overwhelming on where to start and what your rights and the rights of [...]


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