AWARDS
FUNDING PROCESS
Pre-application Letter of Intent
All applicants interested in applying for funding from SRNA must submit a Letter of Intent describing the project and goals for which they are seeking funding.
Please note: We are not currently accepting any Letters of Intent. When we start accepting Letters of Intent, you can submit the Letter here. These are reviewed by the members of our Scientific Council.
The applicant will be notified within four weeks following review regarding our decision requesting a full proposal if approved.
Application
Full proposals should provide a detailed description of the research or clinical project that will be partially or fully supported by the grant and a budget providing details of the estimated costs. Proposals are reviewed by our basic and clinical scientists and experts on the Scientific Council. Additional expertise may be sought from ad-hoc reviewers to ensure comprehensive scientific review. Applications will be reviewed based on innovation, scientific rigor and alignment with the mission of SRNA. Potential conflicts of interest for reviewers and applicants must be mentioned in the application and declared prior to the review, and will be recused from the review process. Conflict of interest includes employment at the applicant institution, and collaboration on the project for which funding is being sought.
Recommendations for funding are made to the Board of Directors of SRNA. The final approval for funding is provided by the Board.
ADDITIONAL GUIDELINES
As the clinical care of patients with ADEM, AFM, NMOSD, MOGAD, ON, and TM disease is a core mission of SRNA, the Association will only fund institutions that maintain an open practice for the acute, convalescent and long-term care of this population. Additionally, we encourage those institutions that are funded by SRNA to prioritize the care and treatment of those patients during the acute phase of these disorders.
While we recognize that research on any of the neuroimmune disorders provides significant insights on all of these disorders, the projects funded by SRNA must focus on ADEM, AFM, NMOSD, MOGAD, ON, and TM.
Funding from SRNA may not be used to cover any indirect costs.
PUBLICATIONS AND REPORTING REQUIREMENTS
As reporting requirements, SRNA would require you to submit two articles (as six-month reports) for SRNA newsletter, which describe the progress and findings from the research. We also require a final report be submitted detailing the expenditure of the funds and a short summary that we will publish on SRNA website. SRNA should be acknowledged in any publications of research results that were supported by a SRNA grant.
PUBLIC ACCESS POLICY
The Siegel Rare Neuroimmune Association funds clinical and biomedical research in order to better understand the causes of Acute Disseminated Encephalitis, Acute Flaccid Myelitis, MOG Antibody Disease, Neuromyelitis Optica Spectrum Disorder, Optic Neuritis, and Transverse Myelitis; and to advance early diagnosis, treatment, and cure. The main output of this research is new knowledge. To ensure this knowledge can be accessed, read, applied, and built upon in fulfillment of our goals, the Siegel Rare Neuroimmune Association expects its researchers to publish their findings in peer-reviewed journals.
In addition, it is a condition of the Siegel Rare Neuroimmune Association’s funding that a copy of all funded research outputs, in the form of final, peer-reviewed manuscripts, must be delivered to the Siegel Rare Neuroimmune Association upon acceptance. These manuscripts will be made publicly available on the Siegel Rare Neuroimmune Association website no later than 12 months after the official date of publication.
This requirement applies to all Siegel Rare Neuroimmune Association grants awarded after January 1, 2012.
The policy is developed with the Scholarly Publishing and Academic Resources Coalition (SPARC) and is based on the policy developed by Autism Speaks, with that organization’s permission.
GRANTS WE’VE FUNDED
Assessing Condition-Specific Knowledge in Patients with Rare Neuroimmune Disorders (2022-2023)
Awarded to: Kyle Blackburn, MD
UT Southwestern Medical Center, Dallas, TX
Fellowship Research Project on Idiopathic Transverse Myelitis (2022-2023)
Awarded to: Monique Anderson, MD, PhD
Massachusetts General Hospital and Harvard Medical School, Boston, MA
Assessing the Impact of Social Disparities of Health on Disability and Access to Care in NMOSD Patients (2021-2023)
Awarded to: Sammita Satyanarayan, MD
Mount Sinai Icahn School of Medicine, New York, NY
Genetic Study of Acute Idiopathic Transverse Myelitis (2017-2019)
Awarded to: Michael Levy, MD, PhD
Johns Hopkins University, Baltimore, MD
Developing Research Strategies for Assessment and Improvement of the Specificity of Etiological Clinical Diagnosis (2016-2017)
Awarded to: Carlos Pardo-Villamizar, MD
Johns Hopkins University and Johns Hopkins Hospital, Baltimore, MD
Utilizing Brain Imaging to Understand Cognitive Dysfunction in Transverse Myelitis (2016)
Awarded to: Lana Harder, Phd & Benjamin Greenberg, MD, MHS
University of Texas Southwestern and Children’s Dallas, Dallas TX
*Funded through Cosano.org
Validation of Biomarkers in Transverse Myelitis (2016)
Awarded to: Carlos Pardo-Villamizar, MD
Johns Hopkins Hospital, Baltimore, MD
Pediatric Rare Neuroimmunology Biorepository (2016)
Awarded to: Benjamin Greenberg, MD, MHS
University of Texas Southwestern and Children’s Dallas, Dallas TX
4th Annual Patient Care Symposium hosted by The Johns Hopkins Transverse Myelitis Center and Johns Hopkins Project RESTORE (2016)
Awarded to: Johns Hopkins Transverse Myelitis Center
Johns Hopkins Transverse Myelitis Center, Baltimore, MD
Clinical Support Funding for Clinical Program Manager at Johns Hopkins Transverse Myelitis Center (2013-2014)
Awarded to: Maureen Mealy, RN, BSN, MSCN
Mentor – Dr. Carlos Pardo
Johns Hopkins University, Baltimore, MD
Biomarker Discovery for Transverse Myelitis Using Human Proteome Microarray Technology (2013-2014)
Awarded to: Cheng-Ho Jimmy Lin, MD, PhD, MHS
FIRST-STIM: CNS Growth Factor Release and Changes in the Inflammatory Environment in Response to Electrical Stimulation in Subjects with Inflammatory Myelopathies (2012-2013)
Awarded to: Daniel Becker, MD
Hugo W. Moser Research Institute at Kennedy Krieger Institute, Baltimore, MD
Noninfectious inflammatory myelopathies were previously often categorized as idiopathic transverse myelitis, but advances in neuroimaging and neuroimmunology have allowed more specific diagnoses, such as multiple sclerosis (MS) and neuromyelitis optica (NMO). With the exception of relapsing remitting multiple sclerosis (RRMS) there are no existing therapies that alter the course of these diseases. People with these disorders inexorably accumulate disability. Functional electrical stimulation (FES) cycling is a method of applying low level electrical currents to the leg and buttock muscles to cause the weakened or paralyzed muscles to contract and produce a cycling motion of the legs. It has been used most in rehabilitation of patients with traumatic spinal cord injuries (SCI). Over the recent years FES cycling has become an increasingly important modality in rehabilitation of patients with paralysis. It has been shown to have multiple primary medical benefits including: increased muscle mass, improvements in bone density, enhanced cardiovascular function, improved bowel function, decreased spasticity and reductions in bladder infection rate. Most importantly FES may enhance the spontaneous neural repair program and reduce the inflammatory environment within the CNS. One of the most important questions unanswered in regards to this technology is: How much FES is required to result in the most optimal recovery? Currently, an experience based approach is followed (3 to 5 FES cycling sessions per week, 1 hour each). From extensive clinical experience at the International Center for Spinal Cord Injury, it is suspected that the more FES is applied the better recovery is. In order to find the optimal dose of FES a biomarker has been identified that can be measured in the spinal fluid of individuals receiving FES. Brain derived neurotrophic factor (BDNF) levels correlate closely with functional recovery. Currently, there are no controlled clinical trial data available on the effect of FES ergometry on neurotrophin release and functional recovery following neurological injury. The goal of this trial is to measure CSF BDNF concentrations in response to FES ergometry in patients with inflammatory myelopathies. In addition clinical improvement and markers of inflammation in response to FES will be measured. These data will be crucial for the design of a phase 2/3 clinical trial evaluating the efficacy of FES in patients with inflammatory myelopathies.
Evaluating the Therapeutic Potential of Carbenoxolone (CBX) for the Treatment of Transverse Myelitis
Awarded to: Adam Kaplin, MD, PhD
Johns Hopkins University, Baltimore, MD
Cognitive impairment occurs in roughly 50% of patients with Multiple Sclerosis and pilot data suggests that such changes are also comparably prevalent in TM patients. Currently there are no treatments, even experimental ones, that have been shown to improve autoimmune cognitive impairment. The goal of this study is to evaluate the therapeutic potential of carbenoxolone (CBX) for the treatment of transverse myelitis (TM), especially the associated cognitive impairment, using three unique animal models of TM. Carbenoxolone (CBX) is a compound that regulates endogenous cortisol levels. CBX inhibits the activity of the enzyme 11b-hydroxysteroid dehydrogenase 1 (11b-HSD1), decreasing the rate of formation and concentration of cortisol. Increased cortisol levels cause degeneration of the hippocampus, a brain region that mediates the generation and recall of memories, and impaired spatial memory. Hippocampal degeneration has been demonstrated in a variety of disorders that often result in cognitive deficits, including MS.
