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.

DSF Patient Assistance Programs

By |2019-04-16T11:28:48-05:00April 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 [...]

#MemberMonday

By |2019-04-15T09:39:43-05:00April 15th, 2019|Categories: DSF News & Notes, Our Community|

Meet Mountain Region Parent Ambassador - Shawna Davis! This #MemberMonday meet Mountain Region Parent Ambassador Shawna Davis! Shawna was born and raised in Texas and currently resides in the Fort Worth area with her husband, Jeff, and their two daughters, Kendall and Karley. Karley is their youngest and who diagnosed with Dravet syndrome shortly [...]

Fintepla RTF

By |2019-04-15T08:32:56-05:00April 15th, 2019|Categories: Research / Treatments|

Zogenix Receives Refusal to File The U.S. Food & Drug Administration (FDA) has issued a Refusal to File (RTF) letter to Zogenix, Inc. for the rolling submission of their New Drug Application (NDA) for Fintepla (ZX008, low-dose fenfluramine). The FDA cited two deficiencies and is asking for additional non-clinical animal study data and [...]

Boston Bets

By |2019-04-12T08:18:29-05:00April 15th, 2019|Categories: Events|

2019 Double Down Beantown - Boston Bets Against Dravet Join us for a night of fun & giving at our inaugural Boston event - Double Down Beantown - Boston Bets Against Dravet We are excited to announce our Gala Honoree - Dr. Elizabeth A. Thiele, MD, PHD. Dr. Thiele is a neurologist and [...]

Stiripentol (Diacomit) Access

By |2019-04-12T10:00:28-05:00April 15th, 2019|Categories: Research / Treatments|

Accessing Stiripentol in the US DSF received notice on the process for patients in the US to secure Diacomit (Stiripentol), effective April 29th. Should patients need Diacomit® before April 29, 2019, they should continue with their current method for medication access, otherwise please refer to the following information:  As of April 29, 2019, [...]

Dravet Dialogues

By |2019-04-12T10:01:40-05:00April 15th, 2019|Categories: DSF Programs|

New Initiative: Dravet Dialogues DSF is excited to launch Dravet Dialogues, a live, interactive, virtual series of support group meetings taking place March-May 2019. These sessions give parents a chance to connect with community experts on a variety of topics while interacting in real-time with fellow parents and caregivers. We hope that through these [...]

Behavior Survey

By |2019-04-12T10:02:59-05:00April 15th, 2019|Categories: Research / Treatments|

Caregiver Survey: Understanding Behavior DSF is proud to partner with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences managing disruptive or harmful behavior in children with neurologic conditions, such as Dravet syndrome. Results will be shared with health care providers, so they are better able to serve children with [...]

Accessing Recently FDA-approved Treatments for Dravet Syndrome

By |2019-04-16T08:13:39-05:00April 12th, 2019|Categories: Decoding Dravet Blog|

When you have exhausted all possibilities, remember this: You haven't. -Thomas Edison Rare diseases are difficult to diagnose, research, and treat. Even though more than 7,000 rare diseases have been identified, only about 5% of those have indicated treatments. Our community was extremely fortunate to see not one, but two treatments receive FDA-approval [...]

#MemberMonday

By |2019-04-08T07:32:07-05:00April 7th, 2019|Categories: Our Community, Uncategorized|

Meet Erin Reoyo, one of our inaugural West Coast Parent Ambassadors! This #MemberMonday meet West Coast Parent Ambassador: Erin Reoyo! Erin lives in Washington just north of Seattle with her husband, son, and daughter. Her son was diagnosed with an SCN1A-gene mutation and Dravet Syndrome (DS) in April 2016, shortly after his second birthday. [...]

Self Care is Not Selfish

By |2019-04-03T19:08:15-05:00April 5th, 2019|Categories: Decoding Dravet Blog|

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 [...]