It is with great honor that we announce the establishment of The Eclipse Fund in memory of Pauline H. Siegel. The fund will be used to support and accelerate SRNA’s research portfolio to fund discoveries that will directly impact the quality of life for the members of our community.
Despite the difficulties she faced, Pauline always managed to see and feel the blessings of her experience, and never lost hope for a better tomorrow. Pauline lived her life trying to improve the future of other people with TM and other rare neuroimmune disorders – NMOSD, MOG Antibody Disease, ADEM, ON, and AFM. She was a powerful advocate, and touched us all with her compassion and vitality. You can read more about Pauline’s story here.
Pauline’s is a legacy of hope and, in her name, we will drive research forward to find a cure for rare neuroimmune disorders and enable spinal cord repair.
The Pauline H. Siegel Eclipse Fund will drive critical research to:
Restore Function The first FDA approved cell therapy to promote repair through myelin regeneration in Transverse Myelitis is set to begin in 2018. The Siegel Rare Neuroimmune Association, Q Therapeutics, and The University of Texas Southwestern are collaboratively sponsoring this first human safety study to treat central nervous system disease.
Identify Genes and Causation Research at Johns Hopkins University has shown a gene mutation (VPS37A) that is currently known to be present only in Transverse Myelitis patients. The Eclipse Fund will support the validation of this gene and its role in causation.
Improve Diagnosis Biomarkers and novel imaging techniques, once identified and validated, help accurately diagnose myelitis in the acute phase. Recent studies funded by SRNA and conducted by the Rare Genomics Institute and The Johns Hopkins Transverse Myelitis Center have revealed an antibody in TM patients that needs further investigation and has the promise of unveiling more details about the biology of the disorder.
Investigate Novel Therapies The Eclipse Fund seeks to fund the development of scientific models of disease that can be used to test existing drug therapies. The goal is to ensure that all potential therapies for restoration and repair are investigated.