Decoding Dravet
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.
Happy Valentine’s Day to Our Caregivers
This Valentine’s Day, I want to recognize and applaud the amazing caregivers in our community. It may not seem like a traditional message for this holiday, but Valentine’s Day is about celebrating love. And let’s face it - what we do as caregivers, day in and day out, is a constant expression of love. It is a pure and unconditional love and a lifelong commitment. Caregiving is a journey [...]
New rescue medication options for the Dravet community
Those with Dravet syndrome have epilepsy that is typically not well controlled. In addition to frequent seizures, many patients regularly experience status epilepticus, which are prolonged seizures lasting more than 5 minutes. This is a serious medical emergency which can be life threatening and requires emergency intervention with rescue medications. Patients may also experience seizure clusters, which are seizures that start and stop, but occur one right after another [...]
New ICD-10 Codes for Dravet Syndrome!
The International Classification of Disease (ICD) is a list first introduced in1948 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 procedures recorded in conjunction with hospital care in the U.S., and it is important for [...]
Ciara’s Spirit of Hope Award Nominations Now Open!
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 in honor of DSF Founder Lori O’Driscoll’s daughter, Ciara, who was diagnosed with Dravet [...]
2020 DSF Conference Registration is Now Open!
Registration for the 4th biennial DSF Family & Professional Conference is open! We are excited to be partnering with Cook Children’s Medical Center in Fort Worth, Texas, and Dr. Scott Perry on this educational and inspiring event which will take place from June 18-20, 2020. It is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, medical professionals, researchers, [...]
Letting go of things that do not serve you
I have never been someone who makes New Year’s resolutions, but this year I have decided to break that tradition. As a start to this new decade, my resolution is to let go of things that no longer serve me. We all have negative people or situations that hold us back and can turn us into something we don’t want to become if we allow them to. We may [...]