Decoding Dravet – Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation.
My name is Mary Anne Meskis. I am the Executive Director of the Dravet Syndrome Foundation and I have an adult son with Dravet syndrome. My 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.
This is an exciting time of the year for DSF and our community - research grant applications were due a few weeks ago and our Scientific Advisory Board has begun reviewing this year’s applications. Announcements of our 2019 grant awardees will be made in early December, so stay tuned! The primary reason DSF came into existence was that the founding members, who were all parents of children with Dravet [...]
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 can share your experience. First, you can share your child’s personal and individual story, [...]
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 interest in the development of precision medicine for genetic epilepsies, such as Dravet syndrome, [...]
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 a working document that can be modified as needed, the Individuals with Disabilities Education [...]
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 your child are. Before a student can receive special education services, they must be [...]
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. Because of this, DSF has set up an easy program for a Casino Night [...]