Lisa McDaniel
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 death in 2012, Lisa switched gears and went to work for the Guthy-Jackson Charitable Foundation (GJCF), where she serves as the Director of Patient Advocacy. She uses her extensive caregiver experience to help other patients and families living with NMOSD.
“I know what it feels like to watch a loved one in pain, and I want to help other families through that journey. Paying forward the kindness shown to my family through difficult times is an honor and a privilege to me.”
Lisa has dedicated herself to making a difference in the NMO community and has vowed to continue the fight for everyone living with NMOSD and their families. She is an accomplished speaker at events across the U.S. She engages with the NMOSD community to provide resources and education, leads several support groups both online, in person, and through zoom. She continues to raise awareness of rare diseases through educational events for the medical community, the patient population and the general public. Lisa has also been the leader for many projects and programs in the NMO community. She has co-written programs for volunteers as well as a wellness program aimed at art therapy for rare disease.
“I was in this community before there were foundations for NMO and before any approved therapies. I have had the opportunity to watch the drastic change in the landscape over the years. We have gone from nothing to several organizations and now four approved therapies!”
Lisa has a heart for patients and for caregivers. She aims to help patients understand the disease process, but feels like caregivers are often the forgotten part of that process.
“Caregiving is difficult. We are often sleep deprived and put our needs last. This leads to burnout and exhaustion. We cannot take adequate care of others if we do not care for ourselves.”
“My mission in life is to enrich every life I have the opportunity to touch, regardless of the situation.”
Click here to read all of Lisa’s articles on Neuromyelitis-Optica.net.