Mary Anne Meskis

The first question that is often asked by newly diagnosed families is when there will be a cure for Dravet syndrome. Rare diseases face common research challenges and Dravet syndrome is no exception. With a small patient population, research funding is typically non-existent and patient data is limited, making research difficult and financially unappealing to […]

Dravet Syndrome Awareness Month takes place each June in the U.S., and International Dravet Syndrome Awareness Day is observed on June 23rd. This year, we are once again recognizing those that we have lost on our third annual Remembrance Day on June 15, 2023. Dravet Remembrance Day is a time for our community to reflect

Last year for Dravet Syndrome Awareness Month, we debuted Dye it for Dravet, after DSF Parent Ambassador Jen Kuhn and her hair stylist, Kelsi Morgan of PRIM Beauty Bar, came up with the idea for this fun and colorful fundraiser. This June, the challenge is back for the bold and the brave who want to

June is Dravet Syndrome Awareness Month in the U.S. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families. We

Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. These workshops take place on odd-numbered years, opposite of our

One of our very own patients deserves special recognition for her recent fundraising efforts. Bridget Fullam, an 18 year old living with a Dravet syndrome diagnosis from Montvale, NJ, has helped DSF secure $100,000 through two grants from The Marilyn Lichtman Foundation for our research grant program. Bridget met the President of the Foundation in

We invite all members of the Dravet syndrome community – patient families, clinicians, researchers, and industry partners – to join us in supporting our bi-annual awareness t-shirt fundraising campaign! Twice a year, we offer unique shirt designs – first, for June which is  Dravet Syndrome Awareness Month and again for November, which is Epilepsy Awareness

At DSF, our mission is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. To accomplish this mission, DSF is currently developing our five-year strategic plan to set our priorities and initiatives for 2023-2028. As part of our

As a caregiver for a child or adult with Dravet syndrome, it is normal to have feelings of anger, depression, and resentment. The emotional role of caregiving is stressful and can be overwhelming. Caregiver burnout is real, so it is important to find emotional support and the resources you need to prioritize your mental health