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.
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 [...]
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, you can help spread awareness while raising funds to support those affected by Dravet syndrome. [...]
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 as Director of Family and Caregiver Engagement after serving as a Volunteer Parent Ambassador for [...]
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 Day of Dravet regional workshops each fall (registration is now open!) and our Parent Ambassador [...]