Mary Anne Meskis

Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council. She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF. Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.

Avatar photo
Andelyn Griffiths

Andie

Our family moved to Houston, Texas to get better medical care when we found out our sweet Andie was diagnosed with Dravet Syndrome. We have a great familial support system here and feel so blessed to be surrounded with so much family. Our family loves everything outdoors. We love discovering new places together through hiking,

Andie Read More »

Kiyonori Dravet story

Kiyonori

My second son has Dravet syndrome. He is 27 years old. We live in Japan. A local nonprofit, Pokkapoka Runners, matches participant runners with disabled individuals. Participants deepen their interactions with disabled people through training sessions, practice sessions, etc. Thanks to this activity, my second son is able to run. When did Kiyonori’s seizures begin?

Kiyonori Read More »

Royall Dravet story

Royall

Hi my name is Ericka I am 26 years old and was blessed with my precious Royall on August 18. My son was diagnosed with Dravet syndrome in December, it has been a rough road expecially when you have no knowledge of it, but I am a women of strong faith and I highly believe

Royall Read More »

Matthew Dravet story

Matthew

Our family lives in Georgia. I’m retired Army, and my husband is in the Reserves. My son is 8 years old. I enjoy crocheting and taking care of our mini farm. I have two other children who are 6 & 5. I also love hearing Matthew vocalize and laugh. When did Matthew’s seizures begin? Matthew’s

Matthew Read More »

Colton Dravet story

Colton

We live in New Mexico and we like to go camping and hiking as a family. When did Colton’s seizures begin? His seizures started at 5 months. He had multiple status seizures that lasted between 5 minutes and 2 hours, which is why he got genetic testing. What is your family’s hope for your future?

Colton Read More »

Zara Dravet story

Zara

We live in Ottawa Ontario Canada. I am married with 2 daughters the younger one Zara has Dravet syndrome. Being all together brings us joy, we enjoy family dinners and playing at home. When did Zara’s seizures begin? 5 months old. The early days were very bad for my daughter she suffered with very bad

Zara Read More »

Berkley Dravet story

Berkley

We are a family of four with two daughters. Berkley is the youngest (1 1/2) and Sawyer is 3. We enjoy spending time with each other, nature, and the simple things in life. When did Berkley’s seizures begin? At 4 months old I noticed what looked like tremors in her arms after nursing occasionally. For

Berkley Read More »

Daliyah Dravet story

Daliyah

We are from Maine. We love to go for rides together as a family and we sing a lot of nursery rhymes a long the way. Our daughter really enjoys when we play learning songs to join in together. When did Daliyah’s seizures begin? She had very long seizures and some were polymorphic, changed in

Daliyah Read More »

Hadley Dravet story

Hadley

Hadley is part of a small family from South-Central Kentucky. In the summer months, you can find them out on the lake in their boat or in the woods on their side-by-side. Swimming and fishing are some of their favorite things to do! When did Hadley’s seizures begin? Hadley’s seizures began at 4 months old.

Hadley Read More »

Scroll to Top
Skip to content