Decoding Dravet Blog2019-05-10T15:11:55-05:00

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.

5April, 2019

Self Care is Not Selfish

By |April 5th, 2019|

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, [...]

29March, 2019

What Happens with Medical Care when Children with Dravet Become Adults?

By |March 29th, 2019|

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 [...]

22March, 2019

The Importance of Fundraising for Research

By |March 22nd, 2019|

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 [...]

15March, 2019

Why You Should Be Wary of Online Health Information

By |March 15th, 2019|

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 [...]

8March, 2019

What Families Affected by Dravet Wished that Everyone Knew

By |March 8th, 2019|

A kind gesture can reach a wound that only compassion can heal. Steve Maraboli, Author & Life Coach 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 [...]

1March, 2019

The Power of a Connected Community & Industry Partnerships

By |March 1st, 2019|

Every successful individual knows that his or her achievement depends on a community of persons working together. Paul Ryan 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 [...]