Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
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 …
Ciara’s Spirit of Hope Award Nominations Now Open! Read More »
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 …
The Emotional Toll of Having an Ill Child: 6 Myths About PTSD Read More »
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 …
The importance of sharing the patient and family experience with Dravet syndrome Read More »
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 …
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, medical …
For many years, patients and families affected by Dravet syndrome (DS) felt alone and unheard. They struggled finding medical specialists who could not only recognize and diagnosis the disease, but also knew the best ways to approach treatment. Thanks to advancements in the last decade in the understanding of DS, there has been significant progress …
Building Your Child’s Team of Medical Professionals Read More »
Caring for a child or adult with Dravet syndrome (DS) is challenging. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On top of that they are overworked and exhausted in managing their …
Dravet Syndrome Foundation (DSF) offers programs that bring great value to the Dravet community through three primary pillars – Research; Professional Education; and Caregiver & Patient Support. Our community has done many important things that have helped to move the field forward. DSF’s grant program has awarded over $4.1M through 43 research projects. Thanks to …
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