Mary Anne Meskis

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.

2025 DRAVET SYNDROME AWARENESS MONTH TOOLKIT

Uncategorized / By Mary Anne Meskis

TOOLS TO SUPPORT YOUR AWARENESS EFFORTS: 30 Days of Advocacy Calendar Downloadable Dravet Facts graphics Turning Awareness Into Action: Tips for Advocating Six ways to #AdvocateforDravet graphic Protect essential programs funding graphic Example emails to legislators “I Advocate for Dravet” customizable template “My Dravet Warrior Is” customizable template “Three Things I Wish You Knew” template […]

2025 DRAVET SYNDROME AWARENESS MONTH TOOLKIT Read More »

Create a Custom Social Media Profile Picture

Uncategorized / By Mary Anne Meskis

Click this link to open the profile template. Note: If you do not have a Canva account, you will need to create a free account here to continue. Select “Use template for new design” Select “Uploads” on the left-hand side and “upload file” or drag and drop the image you’d like to make your profile

Create a Custom Social Media Profile Picture Read More »

DSF Receives Platinum Nonprofit Seal of Excellence

Decoding Dravet Blog / By Mary Anne Meskis

DSF is proud to announce that it has once again received the Platinum Seal of Transparency from Candid, the highest level of recognition offered by the nonprofit information platform formerly known as GuideStar. This prestigious designation underscores DSF’s ongoing commitment to transparency, accountability, and trustworthiness. Candid’s Seals of Transparency – Bronze, Silver, Gold, and Platinum

DSF Receives Platinum Nonprofit Seal of Excellence Read More »

Helping Families Manage the Cost of Care

Decoding Dravet Blog / By Mary Anne Meskis

Caring for a loved one with Dravet syndrome can lead to significant medical expenses. We understand that the need for support can arise at various stages, and we’re here to help when it does. The DSF Patient Assistance Grant (PAG) Program is designed to help by providing financial aid for essential medical equipment, ensuring patients

Helping Families Manage the Cost of Care Read More »

Sarah Pasternak – Database Coordinator

DSF Staff / By Mary Anne Meskis

Sarah joined the DSF staff in 2025 but has been involved with the organization as a supporter since around 2015 after she learned that her daughter’s best friend had an SCN1A related seizure disorder. She has her undergraduate degree in Theatre and her Masters of Science in elementary and special education. Sarah lives in New

Sarah Pasternak – Database Coordinator Read More »

Jim Hann – Shipping & Supplies

DSF Staff / By Mary Anne Meskis

Jim is married with two daughters and three grandchildren. His grandaughter began having seizures at 9 months old and was eventually diagnosed with an SCN1A-related disorder. After retiring from his property management business several years ago, Jim welcomed the opportunity to join the DSF team, after witnessing first hand the level of commitment this organization

Jim Hann – Shipping & Supplies Read More »

Mike Chieco

DSF Board Members / By Mary Anne Meskis

Mike lives in San Francisco, CA with his wife Kira and their daughter Mila – who has Dravet syndrome. Mila was diagnosed in November 2023, after prolonged, intractable seizures at daycare. Despite Dravet Syndrome, Mila is a charismatic and curious two year old who delights in learning, exploring, and driving the family cat, Petunia, crazy

Mike Chieco Read More »

Tristin

Dravet Stories / By Mary Anne Meskis

Tell us about yourself and the Dravet patient in your life For 18 years we have fought Dravet syndrome. Tristin had his first official seizure at 4 months old. Looking back though, I believe he was having seizures much earlier. Dravet syndrome has not stopped us from living. We camp, do coastal visits and go

Tristin Read More »

CareCompass: A New Resource to Navigate Caregiving

Decoding Dravet Blog / By Mary Anne Meskis

DSF is pleased to share information about a new free platform developed by UCB, with input from the Dravet syndrome and Lennox-Gastaut syndrome patient communities: Developed with caregivers, for caregivers, CareCompass is now available for families and caregivers of individuals with Dravet syndrome. This digital care platform is designed to simplify the caregiving journey and

CareCompass: A New Resource to Navigate Caregiving Read More »

VuMedi

Uncategorized / By Mary Anne Meskis

VuMedi is a private video education platform for doctors. Over 450,000 doctors use VuMedi to improve patient care and grow their practice. DSF is excited to have received an invitation to partner with VuMedi, sharing educational videos from our archives to support healthcare professionals in diagnosing and caring for patients with Dravet syndrome.

VuMedi Read More »

2025 DRAVET SYNDROME AWARENESS MONTH TOOLKIT

Create a Custom Social Media Profile Picture

DSF Receives Platinum Nonprofit Seal of Excellence

Helping Families Manage the Cost of Care

Sarah Pasternak – Database Coordinator

Jim Hann – Shipping & Supplies

Mike Chieco

Tristin

CareCompass: A New Resource to Navigate Caregiving

VuMedi

Dravet Syndrome

Caregivers

Get Involved