A Connected & Collaborative Community

By |2019-05-13T14:12:38-05:00February 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 [...]

#MemberMonday

By |2019-05-13T14:12:02-05:00February 22nd, 2019|Categories: Our Community, Uncategorized|

Meet DSF Family Network Parent Ambassador, Beth Fox This #MemberMonday meet Parent Ambassador Beth Fox! Beth has been an active member of #teamDSF for several years hosting fundraisers and supporting community members and officially joined our team as one of inaugural Parent Ambassadors in 2017 when we launched the DSF Family Network. Beth lives in Branford, [...]

#MemberMonday

By |2019-05-13T14:12:22-05:00February 22nd, 2019|Categories: Our Community, Uncategorized|

Meet DSF Family Network Parent Ambassador, Mandee Call Ordaz This #MemberMonday meet Midwest Region Parent Ambassador Mandee Call Ordaz! She joined #teamDSF as one of inaugural Parent Ambassadors in 2017 when we launched the DSF Family Network. Mandee has a passion for uniting Dravet families in the Detroit area and is hosting a family [...]

Hope Through Research

By |2019-09-14T13:00:04-05:00February 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 |2019-05-13T14:13:10-05:00February 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 |2019-05-13T14:13:16-05:00February 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 [...]