TMA Grant to the Accelerated Cure Project: A Progress Report

In November 2008 The Transverse Myelitis Association awarded a grant of $10,000 to the Accelerated Cure Project to enroll patients with ADEM, NMO, ON and TM into the repository.  Through a matching funds program, ACP will be able to devote $20,000 for the purpose of enrolling people with the rare neuroimmunologic disorders.

The Transverse Myelitis Association has established a partnership with the Accelerated Cure Project.  In November 2007, the TMA awarded a $35,000 grant to ACP for the purpose of enrolling people with TM, NMO, ADEM and ON into the repository.  The entire TMA grant was used during the past year to enroll 63 people into the ACP repository who are diagnosed with NMO (7), ON (1), TM (51) or ADEM (4).  Each one of the six collection sites played a role in enrolling these people.

The Accelerated Cure Project represents a wonderful opportunity to foster and facilitate research on these rare neuroimmunologic disorders.  Researchers are provided with access to a large database of information and samples that would not otherwise be available to any single medical research institution.  The TMA is actively engaged in recruiting adults and children with TM, ADEM, NMO and ON into the ACP repository.  The TMA is represented on the ACP oversight committee.

The samples collected from our grant have been used in five research studies:

David K. Simon, M.D., Ph.D. Beth Israel Deaconess Medical Center
Variations in mitochondrial DNA
382 cases (346 MS, 6 NMO, 2 ON, 19 TM, 1 ADEM, 8 CIS) and 31 controls;

Brian Weinshenker, M.D. Mayo Clinic
Genetic and immunogenic analysis of AQP4 in neuromyelitis optica
5 NMO subjects who have tested positive for NMO-IgG antibody;

Philip DeJager, M.D., Ph.D. Broad Institute
Validation of genetic determinants of disease course in MS
735 cases (640 MS, 11 NMO, 3 ON, 54 TM, 4 ADEM, 23 CIS) and 242 controls;

Nir Dotan, Ph.D. Glycominds Ltd.
The ability of anti-glucose antibodies to diagnose and stratify MS patients
868 cases (743 MS, 71 TM, 13 NMO, 4 ON, 6 ADEM, 31 CIS), 140 unrelated controls and 251 related controls

Michael Demetriou, M.D. University of California Irvine
Gene alleles that affect protein glycosylation
871 cases (746 MS, 13 NMO, 4 ON, 69 TM, 8 ADEM, 31 CIS) and 18 unrelated controls.

ACP continues to receive research proposals; there will be many more opportunities for current and future samples to make a significant contribution to research.  It is so important to keep in mind that for each of the studies identified, the scientists are developing profiles for each of the disorders; all of the data is generated by individual sample.  This means that the information being entered into the ACP database includes data about each of the disorders.  The information is not being aggregated as “other neuroimmunologic disorders” or as controls.  This approach will facilitate meaningful analysis of the data to learn about each of these disorders. 

During the Rare Neuroimmunolgic Disorder Symposium held this past July in Seattle, eligible attendees were given the opportunity to enroll in the ACP repository. Thanks to the efforts of Johns Hopkins neurologist Dr. Ben Greenberg, study coordinator Jana Goins, and their top-notch nursing staff, 39 people were enrolled in the repository in just one day. This represents a nearly 50% increase in the number of subjects in the repository with TM, ADEM, and NMO!  ACP and the TMA express their gratitude to the Johns Hopkins staff, and also to the central laboratory vendor, SeraCare, for handling this major (and exciting) influx of subjects.

With the enrollment bump from the symposium and the continued efforts of all six collection sites, the number of enrollees in the repository continues to swell!  As of October 2008, there were 1351 people enrolled, 1011 case subjects (those with MS - 837, TM - 109, ADEM - 9, NMO - 18, ON - 5, or a single MS-type event - 33) and 340 controls.  The growing number of enrollees increases the power and usefulness of the repository to researchers studying the causes of these diseases. Currently, 13 research studies are being supported with samples and data from the repository, with additional research proposals pending approval. Visit www.acceleratedcure.org/repository/status.php to see regular updates on the status of the repository.

The ACP repository could help us find the causes and possible cures for TM, NMO, ADEM and ON.  But this will only happen if we can raise the money to support specific research projects on these rare disorders.  At present, almost all of the ACP repository studies are focused on MS.  When scientists learn about MS, they are also learning about these other disorders.  The more they understand about the immune system and the more they understand how and why the nervous system is vulnerable to these attacks, the more they may gain insights into each of these disorders.  To learn the causes of TM, ADEM, ON or NMO and to develop better diagnostic tools, researchers need to specifically study these disorders.  The TMA will be targeting fundraising efforts in order to specifically support TM, ADEM, NMO and ON studies from the ACP repository.  We will need your help to make this happen.