Foundation Event

The Power of Rare – NMO Patient Day 2017

Name: The Power of Rare – NMO Patient Day 2017
Start: 2017-03-15
Location: LAX Hilton Hotel

The Guthy-Jackson Charitable Foundation’s 8^th Annual NMO Patient Day was held on March 15, in Los Angeles, CA, with the theme, “The Power of Rare.” Founders Victoria Jackson and Ali Guthy opened the conference by sharing their perspectives on what living with a rare disease was like nine years ago, and what it means to them now, nearly 10 years later.

“While NMO is a rare disease,” Co-Founder Victoria Jackson said addressing the audience, “in those early years feeling so powerless, nine years later we’ve been able to find the power in being rare.” It was through research over those years she discovered, “what we think is so rare, isn’t necessarily so rare.”

For Ali Guthy, “The Power Of Rare” means, “building this tremendous community, and the strength we found in each other – working towards building a promising future for NMO.”

The day-long conference included a CIRCLES NMO Biorepository blood draw, information about NMO clinical trials, “Ask the Docs” sessions, preliminary results from the foundation’s quality of life survey, breakout sessions and sessions led by NMO-Advocate attendees.

“As a first-timer at the event, I found it informational and welcoming by all staff who made this possible, and all fellow NMO patients. I was relieved to know that my concerns as an NMO patient are common with others. I was able to learn more about this rare condition and tips that can help in the future.”
Katelin Castillejo

Patient Day Attendance

This year’s NMO Patient Day hosted 166 attendees from 27 states and 5 countries.

“Thank you so very much for having me there. I met some super people and had an amazing time. I made friends, learned about what to do in an attack and ‘being scared and alone’ was replaced with ‘I got this, I have control.’ I know NMO and am no longer afraid.” – Betty L. Friis-Halcomb