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NMOtion Blog

Discussing NMO Research and Advocacy

2018 Foundation Milestones

The past year has marked exciting advances in the world of NMO. From conferences to clinical trials, the foundation is pleased to share the latest year of progress from the foundation and many of our partners.

January

CIRCLES Reaches Enrollment Goal

The CIRCLES study reached its enrollment goal of 1,100 participants.  The study started in 2013 and is the largest NMO study in the world. The clinical data and blood specimens collected from participants will serve as resources for researchers and scientists for years to come in their search for effective treatments and a cure for NMO. Learn more about CIRCLES.


February

GJCF Summit for NMO Tolerization

Pictured from left to right: Dr. Gerald Nepom, Director of the Immune Tolerance Network; Michael Yeaman, Chief of the Division Molecular Medicine, Harbor-UCLA Medical Center and GJCF Advisor; Dr. Daniel Rotrosen, NIH Director of the Division of Allergy, Immunology, and Transplantation
Pictured from left to right: Dr. Gerald Nepom, Director of the Immune Tolerance Network; Michael Yeaman, Chief of the Division Molecular Medicine, Harbor-UCLA Medical Center and GJCF Advisor; Dr. Daniel Rotrosen, NIH Director of the Division of Allergy, Immunology, and Transplantation

The year was launched with a weekend-long summit that focused on transforming science into life-saving solutions for neuromyelitis optica (NMO). Researchers, industry members and leaders from the NIH and Immune Tolerance Network travelled from countries as far as Australia, Japan, Germany, Spain and the United Kingdom to attend. Sitting shoulder-to-shoulder, they discussed the exciting, but challenging prospect of using a medical therapy called tolerization as a means of curing NMO.


March

9th Annual NMO Patient Day

The Guthy-Jackson Charitable Foundation’s 9th Annual NMO Patient Day was held on March 18, in Los Angeles, CA, with the theme, “NMO State of the Union.” 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. Click to learn more.


April

10th Annual International NMO Roundtable Conference

The Guthy–Jackson Charitable Foundation’s 2018 International NMO Roundtable Conference, “NMO State of the Union,” was the foundation’s tenth scientific conference. Over 130 leading NMO clinicians, researchers and industry members from 25 countries were among those in attendance. Click to learn more.

Victoria Jackson Honored with Pontifical Key Advocacy Award at Unite To Cure: Fourth International Vatican Conference

Victoria Jackson, Founder of The Guthy-Jackson Charitable Foundation (GJCF), was honored with the 2018 Pontifical Key Advocacy Award at Unite To Cure: Fourth International Vatican Conference.

The award recognizes her visionary approach and transformative impact in advancing human understanding and funding for neuromyelitis optica (NMO) and related diseases.


August

Foundation Celebrates 10 Year Anniversary

In 2008, Ali Guthy, daughter of Victoria Jackson and Bill Guthy, was diagnosed with a little-known disease called neuromyelitis optica (NMO), which causes blindness and/or paralysis. The Guthy-Jackson Charitable foundation was founded and funded to bring NMO research forward.

In just 10 years, the founders’ visionary approach has achieved milestones and elevated the clinical experience for NMO patients by improving options for treatment, prevention and progress toward a cure.  Together, through the foundation, they have invested more than $55 million in 76 research projects to understand the pathophysiology and biochemistry of NMO.

Click here to view a slideshow of foundation achievements.


October

GJCF-Industry NMO Symposium at ECTRIMS

The 2018 ECTRIMS conference was held in Berlin and remains one of the largest global gatherings of neurologists. On Oct 12 GJCF and members of its Industry Council including Alexion and Viela Bio hosted a special, one-day NMO Symposium entitled “Global Partnerships for Cures.” This year a record number of attendees gathered to discuss topics including patient experience and new treatments for NMO.

Breakthroughs in Clinic

At the symposium, Alexion Pharmaceuticals, who had recently announced positive results from Phase 3 of their clinical trial for Soliris, spoke to the audience about its trial. Adding to the excitement of the potential of a therapeutic for NMO, Viela Bio took the stage and announced positive results in its Eculizumab trial. And finally, at a scientific session, one of the largest announcements at ECTRIMS came from Industry Council member Chugai Pharmaceuticals, who too announced positive results from Phase 3 of their Sakura Sky clinical trial.

Three NMO trials with three announcements of positive results is a phenomenal story. Stay tuned to hear more regarding further announcements.

The GJCF is grateful to its industry partners who invest time, energy and resources to help solve NMOSD. Read more about these exciting advances on our blog.

The GJCF does not perform clinical trials, nor does it endorse any particular company, therapeutic agent or regimen, or clinical trial design.

Moscow Conference Offers “Clues to the Right Diagnosis & Effective Therapy”

Dr. Brian Weinshenker, Mayo Clinic

The first-ever Russian NMO conference was held in Moscow on Oct. 15. With standing room only, over 300 international attendees discussed the future of diagnosis and therapy at the I.M. Sechenov First Moscow State Medical University. Click here to learn more and view photos from the event.


December

KCBS/A2A Spotlight Interview with Victoria Jackson

KCBS Radio afternoon anchor and A2A founder Jeff Bell spotlights Victoria Jackson and the work she and her family are doing to find a cure for Neuromyelitis Optica (NMO), a rare autoimmune disease that attacks the nervous system and can be fatal. Click here to listen to the interview.

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