DSF Parent Ambassador

Melissa O’Bryan – AK (West)

Melissa is the proud mom to four boys. Her and her husband, Jim make their home in Ketchikan, Alaska, a small island on the SE tip. Her son, Owen, was diagnosed with Dravet Syndrome at three years of age. She credits awareness and research for her son’s early diagnosis. Her passion for advocacy has led to her role in the DSF Parent Ambassador program.

 Due to the remote area they live in, they access specialty care by flying to Seattle Children’s Hospital. They work closely with their local pediatric team and their specialists to ensure Owen’s care needs are met.

 Melissa has spent a lot of time educating herself on IEP Rights and Responsibilities, helping parents advocate and understand their rights to special education resources. This led to her running for a seat on her local School Board, and she is now serving a 3 year term on the Board of Education for her community. She has previously been an advocate for the Epilepsy Foundation and has co-chaired the Epilepsy Foundation NW walk in her community. She has narrowed her focus to continue to help parents and children with the diagnosis of Dravet Syndrome and other rare epilepsies as she has received so much support herself.

 Melissa wants to continue to support families in their struggles and triumphs with Dravet Syndrome, advocacy, inclusion, disability rights and making sure that families feel the strength and support that the DSF can offer.

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