Mary Anne Meskis

About 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 and the Rare Epilepsies Network Registry. 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 Illinois with her husband and three children, the youngest of whom has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.

The Battle-Heavy Years

By |2019-06-03T11:31:26-05:00June 14th, 2019|Categories: Decoding Dravet Blog|

This week's guest blog post comes from DSF Parent Ambassador Morgan Turpin. Morgan is a full-time genetic scientist, a mother of two, a part-time writer, a parent ambassador for Dravet Syndrome Foundation, and an avid researcher and advocate for her son.  She aims to spread awareness about Dravet syndrome and the difficulties of parenting [...]

That Age Was So Hard

By |2019-05-30T10:37:49-05:00June 7th, 2019|Categories: Decoding Dravet Blog|

This week's guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny's diagnosis, Wendy began fundraising and looking for ways she could help Penny and others with Dravet syndrome. Wendy joined #teamDSF in March [...]

A Light at the End of the Tunnel

By |2019-05-30T16:49:11-05:00May 31st, 2019|Categories: Decoding Dravet Blog|

This week's guest blog post comes from Ashley Kerns. Ashley resides with her 3 children and furbaby in Lake Charles, Louisiana. Her daughter was recently diagnosed with Dravet Syndrome earlier this year. Ashley works at her family’s marine construction business, Mike Hooks, LLC. When she isn’t busy being mommy, Ashley enjoys running and traveling. Her [...]

Day of Dravet Regional Workshops

By |2019-05-20T16:37:36-05:00May 24th, 2019|Categories: Decoding Dravet Blog|

Save the Date for the 2019 Day of Dravet Workshop near you! Recognizing that it was often difficult and/or too expensive for families to travel to DSF's family & professional biennial conference, we wanted to offer another educational opportunity that would be easier for our community to access. In 2017, as an offshoot [...]

Building Your Child’s Team of Medical Professionals

By |2019-05-13T06:57:04-05:00May 17th, 2019|Categories: Decoding Dravet Blog|

Your relationship to your child’s medical team has everything to do with their health and well-being. For many years, patients and families affected by Dravet syndrome (DS) felt alone and unheard. They struggled finding medical specialists who could not only recognize and diagnosis the disease, but also knew the best ways to approach [...]

#MemberMonday

By |2019-05-13T13:44:08-05:00May 15th, 2019|Categories: Our Community|

Meet our new Administrative Coordinator, Jenny Gallo! This #MemberMonday meet our newest staff member, Jenny Gallo! Jenny has been an active fundraiser and advocate for Dravet syndrome since her daughter Lena was diagnosed. She officially joined #teamDSF as a Parent Ambassador for the Northeast Region representing the northern New Jersey and New York City [...]

A Dravet Mother’s Day

By |2019-05-30T13:50:59-05:00May 10th, 2019|Categories: Decoding Dravet Blog|

A Dravet Mother's Day Guest Post by Wendy Fry This week's guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny's diagnosis, Wendy began fundraising and looking for ways she could help Penny and [...]

June is Dravet Syndrome Awareness Month!

By |2019-05-13T13:54:47-05:00May 3rd, 2019|Categories: Decoding Dravet Blog|

Help DSF raise awareness, as well as research funding, during Dravet Awareness Month. Many hurdles exist in the Dravet syndrome (DS) community – including an understanding of the syndrome as well as the funds needed to research and find better treatment options. When you have a rare disease the largest setback for progress [...]

DSF’s Research Grant Awards Program

By |2019-05-13T13:58:12-05:00April 26th, 2019|Categories: Decoding Dravet Blog|

Learn more about DSF's Research Grant Program. Dr. Jack Parent of the University of Michigan gave DSF invaluable advice and guidance in our early days. He also recognized and applauded our efforts, and his backing and support gave us credibility within the medical and research communities as the organization grew. He helped us [...]

DSF Patient Assistance Programs

By |2019-05-13T14:00:42-05:00April 19th, 2019|Categories: Decoding Dravet Blog|

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 [...]