Organizations Filed Purposes:
TO SUPPORT AND ADVOCATE FOR INDIVIDUALS AND THEIR FAMILIES DIAGNOSED WITH RARE NEUROIMMUNE DISORDERS OF THE CENTRAL NERVOUS SYSTEM; TO PROMOTE AWARENESS AND TO EMPOWER PATIENTS, FAMILIES, CLINICIANS AND SCIENTISTS THROUGH EDUCATION PROGRAMS AND PUBLICATIONS AND TO ADVANCE THE SCIENTIFIC UNDERSTANDING OF AND THERAPY DEVELOPMENT FOR THESE RARE DISORDERS BY SUPPORTING THE TRAINING OF CLINICIANS-SCIENTISTS DEDICATED TO THESE RARE DISORDERS AND BY SUPPORTING BASIC AND CLINICAL RESEARCH. OUR GOAL IS TO IMPROVE THE QUALITY OF LIFE OF INDIVIDUALS WITH RARE NEUROIMMUNE DISORDERS.
The SRNA publishes a newsletter 3 times a year and an annual report that is distributed to its membership. The newsletters contain articles written by physicians that focus on rare neuroimmunologic disorders as well as the most effective treatments for symptom management. Regular updates that relate information about new treatments and research are also included. The SRNA maintains an extensive website with educational materials that include specific symptom and condition information for rare neuroimmunologic diseases; podcasts with physicians, blogs written by medical professionals as well as SRNA members; and archives of all past newsletters. The website also facilitates support contracts between patients and their families through support groups and social media contacts. In addition, the SRNA has held a symposium to bring together individuals diagnosed with rare neuroimmune disorders and the clinicians and researchers that focus on these disorders. This event is the only one of its kind. Our goal is to continue providing this valuable resource to our community for many years to come.
The SRNA partners with the Center for Courageous Kids (CCK) in Scottsville, KY to hold an annual summer camp for children (ages 5 - 17) and their families who have been impacted by these rare neuroimmunologic disorders. The entire week of camp is offered to these children and their families free of charge and allows these children to experience the joys of camp and connect with others who experience the same symptoms and conditions.
The SRNA provides research grants to medical institutions for work on understanding of treatments for these neuroimmunologic disorders. Two James T. Lubin Fellows were active in 2019. This fellowship supports the post-residency training of a clinician at an academic medical facility, who is committed to a career in academic medicine with a specialization in rare neuroimmunologic diseases and research. The SRNA is also providing support to participating medical centers by assisting in the recruitment of pediatric patients to take part in the CAPTURE (Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate) study funded by PCORI. The study is designed to assess the current state of Pediatric TM (including AFM or Acute Flaccid Myelitis) in terms of diagnosis, treatment and outcomes. The SRNA is also supporting the first study to investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells in Transverse Myelitis.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
|Name||Title||Hours Per Week||Total Salary|
|James Timothy Lubin||Executive Committee Member||20||$0|
|Peter C Johnson||Director||3||$0|
|Carlos A Pardo-Villamizar Md||Director||5||$0|
|Douglas A Kerr Md Phd||Director||3||$0|
|Benjamin M Greenberg Md||Director||5||$0|
|Bruce L Downey||Director||3||$0|
|Linda Malecky||Treasurer, Vice President||20||$0|
|Sanford J Siegel||President||20||$0|
Data for this page was sourced from XML published by IRS (public 990 form dataset
) from: https://s3.amazonaws.com/irs-form-990/202043189349310294_public.xml