1201. A Conversation about Grief and Loss with Lisa McDaniel

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.