100 Pageviews Read Stories
- EIN 91-1780467
- (855) 380-3330
- 1787 Sutter Pkwy Powell OH 43065-8806 USA
- www.myelitis.org
- Add to Favorites
Nonprofit Overview
Causes: Health, Neurology & Neuroscience, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines
Mission: To support and advocate for individuals and their families diagnosed with rare neuro-immune 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 diseases and by supporting basic and clinical research. Our goal is to improve the quality of life of individuals with rare neuro-immune disorders.
Programs: The tma publishes a quarterly newsletter 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 tma 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 tma 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.
the tma 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 diseases. 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 tma provides research grants to medical institutions for work on understanding of treatments for these neuroimmunologic diseases. The third james t. Lubin fellowship was awarded in 2015 with training completed in 2016. 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. Two additional jtl fellowships were awarded in 2016. The tma 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.