When There are Problems with Your Child’s IEP

By |2019-09-10T17:43:49-05:00September 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 [...]

The ABCs of IEPs – Learning the Basics

By |2019-09-05T12:56:36-05:00September 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 [...]

Race for Research

By |2019-08-21T10:55:30-05:00August 23rd, 2019|Categories: Decoding Dravet Blog|

Are you looking for a way that you can turn your love for fitness into a fundraising activity and see the real impact of your actions for DSF? Your next marathon, distance biking, 5K, or other athletic event could be the start of something wonderful. By signing up for DSF’s Race for Research program, [...]

Dravet Birthdays

By |2019-08-20T09:15:34-05:00August 16th, 2019|Categories: Decoding Dravet Blog|

This week’s guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny’s diagnosis, Wendy began fundraising and looking for ways she could help Penny and others with Dravet syndrome. Wendy joined #teamDSF in March 2018 [...]

DSF Parent Ambassador Program

By |2019-08-09T09:17:23-05:00August 9th, 2019|Categories: Decoding Dravet Blog|

Having a loved one diagnosed with Dravet syndrome is scary and often overwhelming, even with guidance from the best medical professionals. The DSF Family Network was established with the hope that it would provide families with the support and reassurance that only another patient family can offer. The programs of our network include our [...]

Overview of Current Rescue Medications

By |2019-07-29T15:14:32-05:00August 2nd, 2019|Categories: Decoding Dravet Blog|

Parents of a child or adult with Dravet syndrome are acutely aware of the need for rescue medications due to the frequency of prolonged seizures and/or seizure clusters that are experienced by the patient community. Rescue medications work quickly to stop atypical seizures and help to avoid emergency situations. They are prescribed with the [...]

The Need for Awareness of SUDEP

By |2019-07-19T17:33:47-05:00July 19th, 2019|Categories: Decoding Dravet Blog|

You can anticipate that you will have some worries when you become a parent. You are fully responsible for this new little person and for keeping them safe. When they are home there are dozens of safety measures you can implement - smoke detectors, fencing, safety gates, etc. As they grow and develop, you [...]

The Importance of Natural History Studies

By |2019-07-02T20:57:58-05:00July 12th, 2019|Categories: Decoding Dravet Blog|

As a parent of a 19 year old son with Dravet syndrome, I recognize that the idea of giving up your time to participate in any type of research may sound overwhelming or next to impossible. Your days are already packed from morning to night with the constant care of your child, including therapies, [...]