GJCF NMO Videos

Recommended Reading

What book(s) do  you recommend? 

The Guthy-Jackson Charitable Foundation recommends these uplifting and healthy living books to help those living with NMO. 

World Rare Disease Day

Information and discussion on World Rare Disease Day bythe Children's Rare Disease Network.

GJCF Medical Advisors

All Greater Good Foundation Techical Working Group

A membership only group for the All Greater Good Foundation.

"Connect the Docs"

FIND A NMO CLINICIAN NEAR YOU.

The Guthy-Jackson Charitable Foundation is creating maps displaying the locations of doctors who treat NMO and we need your help!

If your doctor(s) treats NMO patients, please email us at: gjcf@allggf.org.  Please include the name of your doctor(s), clinical site name, and the clinical site location.  In your email, please include a confirmation of permission from your doctor(s) allowing stated information to be posted on Spectrum and The Guthy-Jackson Charitable Foundation's website. 

FIND CLINICIANS IN: 
ASIA    EUROPE    SOUTH AMERICA   UNITED STATES

or Click on the Group Pages below to view maps.

The Guthy-Jackson Repository for NMO

Participate in the GJCF Repository for NMO by donating a sample.

Overview

In an effort to foster scientific collaboration for Neuromyelitis Optica (NMO) Spectrum Disease, The Guthy-Jackson Charitable Foundation has established a sample and data repository for NMO with The Accelerated Cure Project (ACP) and the University of Texas Southwestern (UTSW). In this initiative, people with NMO can enroll into the repository at ACP’s collection sites located in leading neurology clinics across the US. Participants provide blood samples and information, which will in turn be used by qualified scientists whose research will contribute to the diagnosis, prevention, treatment, and/or cure of NMO.

How Subjects Are Enrolled

NMO subjects are primarily enrolled through the efforts of a study nurse employed by UTSW. Working together with ACP, NMO subjects will be identified and invited to participate in the repository, either by visiting one of the ACP repository sites or accepting an enrollment visit from a UTSW Registered Nurse (R.N.).

We Will Come to You

If you would like to participate in the NMO Repository by donating a sample, but you are unable to visit one of the NMO Repository sites, the NMO Study Nurse, employed by the University of Texas Southwestern Medical Center in Dallas, TX, will travel to your location to draw your sample.

Please contact Sara Loud at the ACP to schedule your blood draw.   

 How Scientists Request Samples

The request process is straightforward. Researchers are asked to submit a written proposal using the ACP Sample Request Form. The proposal is reviewed at Accelerated Cure Project and ultimately submitted to an oversight committee for review. Researchers are encouraged to make application immediately upon discernment of need. A response will be forthcoming upon review and recommendation.

Collection Sites

• Johns Hopkins School of Medicine, Baltimore
• University of Texas Southwestern Medical Center, Dallas
• Multiple Sclerosis Research Center of New York
• Shepherd Center, Inc., Atlanta
• University of Massachusetts Medical School
• Barrow Neurological Institute, Phoenix
• Beth Israel Deaconess Medical Center, Boston
• Ohio State University Medical Center, Columbus
• Rocky Mountain MS Center at Anschutz Medical Campus, University of Colorado Denver

Pediatric Collection Sites

• Johns Hopkins School of Medicine, Baltimore
• University of Texas Southwestern Medical Center, Dallas
• Multiple Sclerosis Research Center of New York
• University of Massachusetts Medical School
• Barrow Neurological Institute, Phoenix

More Information

To learn more about the repository, its operations, and available samples and data visit the Accelerated Cure Project’s web site at: http://www.acceleratedcure.org/repository/index.php

Contact for Additional Information

Sara Loud
Repository Director
Phone: +1-781-487-0032
Fax: +1-781-487-0009
Email: sloud@acceleratedcure.org

Hollie Schmidt
VP of Scientific Operations
Phone: +1-781-487-0099
Fax: +1-781-487-0009
Email: hollie@acceleratedcure.org
www.acceleratedcure.org

2009 NMO Patient Session - Living with NMO

The NMO Patient Session held on Nov. 11, 2009 was a ground-breaking day for all affected by NMO.  Its impact cannot be overstated for all involved. 

We want to hear about the NMO Patient Session from you, those who participated (either in person, online or just in spirit). If you were not able to participate, but you wanted to, we want to hear from you too! 

Please join this group and create your own page or discussion group to let everyone know how the NMO Patient Session affected you.

Spectrum Helpers

This group maintains the Spectrum help pages.  It also provides a forum for collecting user tips about the effective use of Spectrum.

Spectrum is based on an open-source social networking platform, Elgg.  In 2008, Elgg recieved the Infoworld's BOSSIE award for being the best open source social networking platform.

Spectrum Community

Welcome to the Spectrum Community group.  In this group, you are invited to share your ideas and experiences interacting with Spectrum. 

Create a new Group Page by clicking on "Group Pages" link in the left side navigation box to begin your idea/experience sharing.