1201. A Conversation about Grief and Loss with Lisa McDaniel

Ask the Expert

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. This episode is part of a special series on grief and loss. Lisa McDaniel joined Krissy Dilger of SRNA to share about her family’s experience with neuromyelitis optica spectrum disorder (NMOSD).

Lisa McDaniel’s awareness of rare disease began in 2007, after the onset of neuromyelitis optica spectrum disorder (NMOSD) in her 5-year-old son, Collin. She learned what it took to be a “Rare Mom” and fought for her son’s life. After Collin’s passing in 2012, Lisa switched gears and went to work for the Guthy-Jackson Charitable Foundation (GJCF), where she is now the Director of Patient Advocacy. She now uses her extensive caregiver experience to help other patients and families living with NMOSD. Through GJCF, Lisa is able to engage with the NMOSD community to provide resources, information, and education, as well as lead support groups and raise awareness of rare diseases through educational events.