Decoding Dravet Blog

I often reflect on the amount of time spent traveling to and from the numerous doctor and therapy appointments with my son over the years. Negotiating my work schedule, coordinating school and therapy schedules, packing medical equipment and medicines, loading my son and his wheelchair into the car, making the sometimes-long drives to the clinic, […]

Original Post:  March 13, 2020 Updated:  April 9, 2020 Dravet Syndrome Foundation (DSF) has updated these FAQs from our good friends and collaborators at the Tuberous Sclerosis Alliance to address concerns from the Dravet) community and healthcare professionals regarding the COVID-19 outbreak. For more comprehensive and up-to-date information refer to the Centers for Disease Control and Prevention (CDC) website. SYMPTOMS

It is not uncommon in a rare disease like Dravet syndrome (DS) to have a physician prescribe a medication for “off-label” use by their patient. This means that the drug is not being used in the manner specified in the FDA’s approved package labeling and is being used for a disease that it is not

The International Classification of Disease (ICD) is a list first introduced in 1948 by the World Health Organization (WHO) and is coordinated by the Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC). It is a system used by healthcare providers to classify and code diagnoses, symptoms, and

Nominations are now open for the 2020 Ciara’s Spirit of Hope Award! I hope you will consider nominating an individual whose dedication through their volunteerism to DSF has been outstanding and inspiring to you.  From 2010-2015 the Spirit of Hope award was presented to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash, which was named

This week’s guest blog post comes from Katie Holcomb. Katie is the Manager of PTSD and Coping Initiatives for Ryan’s Case for Smiles, a non-profit dedicated to helping children and their families cope with life changing illnesses and injuries today, while building resilience for the future. In short, to feel better to heal better. She

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

Many of our families over the years have expressed an interest in wanting to host a larger event to help raise awareness of Dravet syndrome and benefit DSF, but are unsure where to start. A larger event, especially if you are new to fundraising, can be daunting and a lot of work on your own.

I think that anyone who has a child with a rare disease has been met with a well-meaning, “I don’t know how you do it.” My response is typically that I do it because I love my son, so I don’t have a choice but to attempt to make his life the best it can

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 will