The MOG Project

The MOG Project is devoted to raising awareness, educating doctors, patients and caregivers, advancing research through expert collaboration and fundraising, and providing support and advocacy for our community in hopes of finding a cure. https://mogproject.org/

The NMO Clinic

A forum for those touched by NMOSD, MOG, TM and related disorders to share and learn. https://www.facebook.com/groups/416192231788552/

CRION Facebook Group

CRION or Chronic Relapsing Inflammatory Optic Neuropathy is a rare auto immune disease that causes frequent bilateral painful relapses of optic neuritis. https://www.facebook.com/groups/CRION/

Siegel Rare Neuroimmune Association (SRNA)

At the Siegel Rare Neuroimmune Association (SRNA), we are devoted to keeping you connected – to education and support.  In these most difficult times, if you can make a difference, we urge you to do so. Please help us to continue to provide vital resources and programming.  Please support our mission to connect, care, and cure https://wearesrna.org/

Optic Neuritis Real Support Group

Group to help those with Optic Neuritis have a place to let it out. A group where people can really talk to each other. Share experiences from day to day. Those who have a love one with Optic Neuritis are welcome. https://www.facebook.com/groups/1397582023852840/

Massachusetts General NMO Clinic and Research Laboratory

Provides leading-edge patient care, clinical research, education and awareness about NMO and other rare autoimmune disorders of the central nervous system. https://www.massgeneral.org/neurology/treatments-and-services/nmo-clinic

The Sumaira Foundation for NMO

The Sumaira Foundation for NMO is a 501(c)(3) organization dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD), fundraising to help find a cure, and creating a community of support for patients + their caregivers. https://www.sumairafoundation.org/

MS Moments

MS Moments mission is to provide financial assistance to individuals with MS (and their immediate family members) in Central Iowa to allow them to become members of a fitness organization to promote health, exercise, and mental and physical well-being. https://www.msmomentsiowa.org/

50 State Network

The 50-State Network vision is to ensure that people living with any diagnosed, chronic illness maintain and grow their voices – lending personal perspective to Washington, DC or throughout the 50 State Capitols, hearing rooms, regulatory meetings and other public forums around the country. Healthcare conversations that impact our access to care must include the voices most impacted: patients and our families. https://www.50statenetwork.org/


OPTIC NEURITUS STATISTICS –

  • Incidence of 1-5 cases per 100,000/year.

  • Cases in women are 2:1 to men.

  • The most typical cause is a demyelinating inflammatory lesion, which is associated with multiple sclerosis.

  • 20% of MS patients experience Optic Neuritis.

  • ‘Atypical’ causes of Optic Neuritis may present with more severe vision loss bilateral involvement, and/or no pain on eye movement. The attack may be triggered by inflammatory or immune-related diseases or through infection.

  • Optic Neuritis typically affects young adults ranging from 18–45 years of age.

“There is growing recognition of the value of, and need for, patient-reported outcome measures in medicine and ophthalmology. Few tools have been developed to date for neuro-ophthalmology, and optic neuritis specifically.” Braithwaite, T., Wiegerinck, N., Petzold, A. et al. Vision Loss from Atypical Optic Neuritis: Patient and Physician Perspectives. Ophthalmol Ther 9, 215–220 (2020).

“Neuromyelitis optica (NMO) and NMO Spectrum Disorder (NMOSD), also known as Devic's disease, is an autoimmune disorder in which white blood cells and antibodies primarily attack the optic nerves and the spinal cord, but may also attack the brain. Sotirchos, E. Neuromyelitis Optica (NMO).(2019)

“MOG Antibody Disease (MOGAD) is a recently coined neuro-inflammatory condition that preferentially causes inflammation in the optic nerve but can also cause inflammation in the spinal cord and brain.” MOGAD: What is MOGAD? SRNA

The Optic Neuritis Treatment Trial11 demonstrated that the majority (77%) of patients with ON are young women, albeit the basis of the female predilection remains unclear.” From the University of Calgary (F.C., J.B., P.S.), Hotchkiss Brain Institute, Calgary; University of Western Ontario (W.H., Y.I.P.), London; University of Ottawa (M.F.), Ottawa, Canada; and University of Iowa and Veterans Administration Medical Center (R.K.), Iowa City. Sex-specific differences in retinal nerve fiber layer thinning after acute optic neuritis. (2012)

“The mechanism responsible for acute optic neuritis (ON) has not been definitively identified but it is believed that an autoimmune reaction damages the myelin sheath that encompasses neurons within the optic nerve.” Guier, C. Stokkermans T., Optic Neuritis. Mayo Clinic. University Hospitals of Cleveland (2020)

“Atypical optic neuritis is a heterogeneous collection of disorders whose presenting features suggest inflammation of the optic nerve. The inflammation may be triggered by an inflammatory or immune-related disease such as neurosarcoidosis, neuromyelitis optica or by a different process such as infection.” Sharma S. Leite M. Typical and atypical optic neuritis – diagnosis and initial management. (2016)

“Optic neuritis is reported to have an incidence of 1-5 cases per 100,000/year…" Dr. R. P. Centre for Ophthalmic Sciences, All India Institute of Medical Sciences, New Delhi, India. Management of optic neuritis. (2011)

"It (ON) can be the initial demyelinating event in up to 20% of patients, and occurs in almost half of patients with MS.” Optic Neuritis. Cleveland Clinic