The Importance of Fundraising for Research

By |2019-03-19T08:10:16-05:00March 22nd, 2019|Categories: Decoding Dravet Blog|

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 [...]

Why You Should Be Wary of Online Health Information

By |2019-03-10T00:19:46-05:00March 15th, 2019|Categories: Decoding Dravet Blog|

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, [...]

The Power of a Connected Community & Industry Partnerships

By |2019-02-28T12:47:50-05:00March 1st, 2019|Categories: Decoding Dravet Blog|

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 Connected & Collaborative Community

By |2019-02-20T08:06:04-05:00February 22nd, 2019|Categories: Decoding Dravet Blog|

We are all working together; that's the secret. Sam Walton I have been asked on a few occasions by other non-profit partners how Dravet Syndrome Foundation (DSF) has been able to accomplish so much in such a short time. To quote Sam Walton, We’re all working together; that’s the secret. The accomplishments of [...]

Hope Through Research

By |2019-02-11T08:53:15-05:00February 15th, 2019|Categories: Decoding Dravet Blog|

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie As Dale Carnegie once said, "Most of the important things in the world have been accomplished by people who have kept on trying when [...]

The Way You Carry It

By |2019-02-02T19:11:48-05:00February 8th, 2019|Categories: Decoding Dravet Blog|

It is not the load that breaks you down. It’s the way you carry it. Lena Horne, Singer It’s difficult to believe that my family has been living with Dravet syndrome for almost 19 years. I still remember breaking down when Elliot received his diagnosis at the age of four and I was [...]

Welcome to Decoding Dravet

By |2019-01-27T22:35:38-05:00February 1st, 2019|Categories: Decoding Dravet Blog|

Elliot with his sister Sophie in 2018 Welcome to my blog, Decoding Dravet. For those who don’t know me, I am Mary Anne Meskis and I was one of the founding members of the Dravet Syndrome Foundation, along with Lori O’Driscoll, Amanda Renz and Janice Stanley. In 2009, we were just a small group [...]