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.
DSF Patient Assistance Programs
Learn more about the Patient Assistance Programs offered by DSF. Dravet Syndrome Foundation (DSF) has developed and offers a variety of programs that serve the needs of our patients and professionals. Two of the programs that are particularly valuable to our patient community are our Patient Assistance Grant Program and our Disaster Relief & Recovery Fund. DSF Patient Assistance Grant (PAG) Program As our patient families know, living [...]
Accessing Recently FDA-approved Treatments for Dravet Syndrome
When you have exhausted all possibilities, remember this: You haven't. -Thomas Edison Rare diseases are difficult to diagnose, research, and treat. Even though more than 7,000 rare diseases have been identified, only about 5% of those have indicated treatments. Our community was extremely fortunate to see not one, but two treatments receive FDA-approval in 2018 with an indication for Dravet syndrome (DS). When no treatment protocol works for [...]
Self Care is Not Selfish
If you get tired, learn to rest, not to quit. -Banksy 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 child’s medical, [...]
What Happens with Medical Care when Children with Dravet Become Adults?
The good physician treats the disease. The great physician treats the patient who has the disease. -William Osler A story I often tell is of an encounter I had with a neurologist at a professional meeting several years ago. After introducing himself, he asked what organization I was with. When I told him I was with the Dravet Syndrome Foundation (DSF), he responded, “Oh, I’m adult neurologist. I [...]
The Importance of Fundraising for Research
There is no power for change greater than a community discovering what it cares about. -Margaret J. Wheatley 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 [...]
Why You Should Be Wary of Online Health Information
Beware of false knowledge; it is more dangerous than ignorance. -George Bernard Shaw 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 [...]