mail2

Foundation Event

The Power of Rare – NMO Patient Day 2017

Home / Foundation Events / The Power of Rare – NMO Patient Day 2017


The Power of Rare – NMO Patient Day 2017



The Guthy-Jackson Charitable Foundation’s 8th 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.

Couldn’t attend NMO Patient Day? You can still participate in research toward a cure for NMO! Participate in the CIRCLES Study. Click here to learn more.

 

“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

 


Breakout Session Attendance

 

 


Patient Day Agenda

Click here to download the 2017 NMO Patient Day Agenda.

 

 

 


Patient Day Photos

2017 NMO Patient Day

The Patient Day group photo is now available for download. Feel free to post, share, and print this photo as needed.

Download Group Photo

Download Group Photo (w/ caregivers)

 


Patient Day Session Videos

 

Click here to view all videos from Patient Day.

 

 


Conference Report

Learn more about Patient Day and the 9th Annual International Roundtable by downloading our Conference Report.



Join the Discussion

Betty says:

I am hoping I can go to the March 15th patient day in La.

Sharna Allen says:

How can I register for this and do you have discount room rates for the Hilton ?

GuthyJackson says:

Hi Sharna.

Registration and hotel information is coming soon and will be posted to this page. To see any announcements, make sure you’re following us on Facebook and our NMO News email newsletter.

Leave a Comment

The Power of Rare.

Power of Rare Book Cover

Victoria Jackson’s new book, THE POWER OF RARE: A Blueprint for a Medical Revolution, shares how a revolutionary model was created to speed discoveries that help empower patients and save lives.

No Thanks