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 […]
There are Days my Child is Not Loveable Read More »
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
The Need for Awareness of SUDEP Read More »
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
The Importance of Natural History Studies Read More »
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
Self Care is Not Selfish Read More »
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
The Importance of Fundraising for Research Read More »
The advent of the internet has been of considerable benefit to rare disease patient communities, including the Dravet syndrome (DS) community. It has given patient families the opportunity to easily connect; to find out about the latest in research, treatments, and clinical trials; and to locate medical specialists who are familiar with their disease. A
Why You Should Be Wary of Online Health Information Read More »
Dravet syndrome (DS) is a diagnosis that nobody wants to receive for their child. This is a difficult journey for any family and literally turns life as you knew it upside down. As a parent, you are struggling to learn about this rare condition that your child is never going to outgrow and which impacts
What Families Affected by Dravet Wished that Everyone Knew Read More »
Early in the development of DSF we could see that community connections, strategic alliances, and partnerships would be critical. As Paul Ryan said, Every successful individual knows that his or her achievement depends on a community of persons working together. By partnering up, we were able to not only produce meaning and value, but we
The Power of a Connected Community & Industry Partnerships Read More »
I have been asked on a few occasions by other non-profit partners how Dravet Syndrome Foundation (DSF) has been able to accomplish so much in such a short time. To quote Sam Walton, We’re all working together; that’s the secret. The accomplishments of DSF are not because of single individual – it is through collaboration
A Connected & Collaborative Community Read More »
