Chat & Connect

Amanda lives in Ocean City, Maryland with her husband and two children, Mason and Abigail. She works as a Physician Assistant in Primary Care and Emergency Medicine and is looking forward to using her experience as both a healthcare provider and Dravet parent during her time on the board.

Amanda was thrown into the Dravet syndrome world in 2018 when her 6-year-old son Mason had his first seizure at four months old. After multiple severe, prolonged seizures Mason was diagnosed with Dravet syndrome at 7 months old. The Dravet Syndrome Foundation was an invaluable resource to Amanda during the early days of Mason’s diagnosis.

Amanda has been a constant advocate for her son seeking all treatment options and therapies, but she quickly learned that effective treatment options are limited. She has made it her mission to share their story to promote Dravet syndrome awareness and raise money to find better treatment options and hopefully someday a cure, for Mason and the others who suffer from this catastrophic condition.

In August 2023, Amanda hosted the first annual Marlins for Mason Billfish Release Tournament, raising over $313,000 for DSF. Marlins for Mason is now a non-profit organization and yearly event with all proceeds donated to DSF. Their fundraising site is www.marlinsformason.com

In her free time, Amanda enjoys going to the beach, fishing, and spending time with family and friends.

DSF hosts monthly online sessions to offer caregivers the opportunity to connect and engage with peers, to support one another, as well as to ask questions of DSF and its staff. We know that exposure to stories, insights, and information sharing is particularly helpful when you are caring for someone with Dravet syndrome.

Chat & Connect virtual meetups are one-hour long sessions, hosted by our Advocacy Team. These sessions are hosted using Zoom video so caregivers are able to interact face to face using a computer or mobile device, or they can also join by phone. The groups are flexible and informal so feel free to join when you are able, even if you can only attend part of the session. We are here to discuss what is important to you, and this is your chance to connect, ask questions, open up about your challenges, share your successes, and meet members of the DSF staff and community.

To keep this a safe and confidential space, all parents, siblings, and extended family who are a part of the DSF Family Network are welcome to join. If you are not yet a member, you can join at this link. There is a daytime and evening session. These sessions will not be recorded.

Register here for our Daytime Session:
10-11 PT / 11-12 MT / 12-1 CT / and 1-2 ET

Register here for our Evening Session:
6-7 PT | 7-8 MT | 8-9 CT | 9-10 ET

Together we can encourage and support one another and inspire hope by sharing this journey!

Please note: our staff moderators do not have clinical training and are there solely to participate as peer moderators of the conversation and share their personal experiences. 

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