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Foundation Event

2018 NMO Patient Day

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March 18 – Los Angeles, CA – The Guthy-Jackson Charitable Foundation’s “NMO State of the Union: 9th International NMO Patient Day” brought together patients, expert clinicians and researchers, industry leaders, caregivers, family and friends for a day of sharing and learning, discussing the latest updates for neuromyelitis optica (NMO) and its spectrum disorder (NMOSD).

Hosted by Founder, Victoria Jackson and moderated by GJCF Advisor, Dr. Michael Yeaman, the 2018 event focused on two key two key advances toward a cure:

  1. Tolerization
  2. Biomarkers

Launching the LEAD Campaign at the event, the foundation has created a new donate section that will help NMO Advocates raise funding for the tolerization and biomarker projects.

Click here to become an NMO LEADer.

225 Attendees from 6 Countries

 

NMO Ambassadors

NMO Ambassadors honored for raising funding for research. Honorees from left to right: Michelle Dean, Maria Loreto (accepting for Jo-Anna Steele), Gabriela Romanow, Craig & Fiona Klein. Honorees not pictured: Nick & Amy Adams, Nancy Reimer.

NMO Ambassadors honored for raising funding for research. Honorees from left to right: Michelle Dean, Maria Loreto (accepting for Jo-Anna Steele), Gabriela Romanow, Craig & Fiona Klein. Honorees not pictured: Nick & Amy Adams, Nancy Reimer.

General Sessions

  1. Welcome
  2. NMO State of the Union
  3. Next Steps to Cures – Survey
  4. Ask the Experts
  5. NMO Clinical Trials Update
  6. Patient H69: Finding Light in NMO
  7. The Power of Rare
  8. A World of Cures
  9. Q&A: Ask the Founder
  10. 2nd African Congress on NMO
  11. Development Ambassadors Awards
  12. LEAD Campaign

Breakout Sessions

  1. Ask the Experts – Open Forum
  2. Diet and Nutrition
  3. Hypnotic Techniques
  4. Simplifying the Science of NMO
  5. Bladder, Bowel, & Sexual Dysfunction
  6. Emotional Health & Stress Management
  7. Navigating Insurance & Coverage

Video Archive

Click here to access the full 2018 NMO Patient Day video gallery.

 

Photo Gallery

2018 NMO Patient Day

 Group Photo

Click here to download full size (14MB).



Join the Discussion

elvey says:

2018 NMO Patient Day is tomorrow, 3/18/18!
Taking the liberty of posting the schedule and streaming info:

Live Stream Timeline (Pacific Times)
8:30 am – Live Stream
10:15 am – Break (Off Stream)
10:30 am – Live Stream
12:00 pm – Lunch & Breakout Sessions (Off Stream)
4:00 pm – Live Stream
5:00 pm – Adjourn
NMO Patient Day Agenda
8:30 – Welcome – Ms. Ali Guthy, Founder
8:35 – NMO State of the Union – Ms. Victoria Jackson, Founder
8:45 – Next Steps to Cures – Dr. Michael Yeaman                                                        
9:00 – Q&A: Ask the Experts
Panelists: Drs. Jeff Bennett, Ardith Courtney, May Han, Michael Levy, John Rose, Nancy Sicotte, Erin Fromm, R.N., Maureen Mealy, R.N.  
10:15 – Break                         
10:30 – Update: NMO Clinical Trials – Dr. Michael Yeaman, Dr. William Marshall – Alexion; Dr. Jack Ratchford – MedImmune/Viela Bio
11:20 – Patient H69:  Finding Light in NMO – Vanessa Potter
11:45 – The Power of Rare – Dr. Michael Yeaman
12:00 pm – 4:00 – Lunch & Breakout Sessions
4:00 – A World of Cures – Ms. Victoria Jackson, Founder                          
4:05 – Q&A: Ask the Founder – Ms. Victoria Jackson
4:10 – 2nd African Congress on NMO – Maoloude Touré, GJCF Global Ambassador
4:20 – NMO Development Ambassadors – Derek Blackway, GJCF & Heather Sowalla, NMO Advocate
4:40 – LEAD Campaign to Solve NMO
4:45 – Be an NMO LEADer – Dr. Michael Yeaman
4:50 – We are the Cure – Ms. Victoria Jackson, Founder
5:00 – Group Photo & Adjourn
Join on Facebook Live > https://www.facebook.com/guthyjacksonfoundation/

When will we be notified if the grant has been approved? Also do we still need to reserve our rooms if we have submitted a travel grant request? Thanks!

There is a travel grant request in the registration page where there’s more info on what can or cannot be covered.

Hi, my sister was diagnosed as NMO in 2014 and would like to participate 2018 patient day. She lost her vision on both eyes and need my assistance. She is on disability, the cost fro flying from Houston and accommodation is huge barrier for her. I wonder if we will be able to get some help on registration fee and hotel discount.

Please email me at jkfamily2014@outlook.com I live in Houston and have NMO. I am trying to start a support group. I would love to meet your sister.

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