ADEM, NMO, ON, Recurrent TM, TM with Lupus, Sarcoidosis, Sjogren’s and HIV: Finding Each Other to Share Information and Support

We are trying to assist people who have the very rare neuroimmunologic disorders find each other for the purpose of sharing information and support.  We are creating the lists identified below for that purpose.  If you have one of these neuroimmunologic disorders and would like to be added to the list and then receive a copy of the list, please send us your information.  I only share these lists with people who are willing to be added to the lists. 

1. Recurrent Transverse Myelitis;
2. Transverse Myelitis with SLE (Lupus);
3. Transverse Myelitis with Sarcoidosis;
4. Transverse Myelitis with Sjogren’s syndrome
5. Transverse Myelitis or NMO with HIV; and
6. Optic Neuritis.

If you are interested in being added to one of these lists and then periodically receiving a copy of the list, you can send me your contact information either by email or through the postal service.  Please send me your full name, complete postal address, phone number and email address (if you have one).  Be sure you clearly identify to which list you would like to be added.

Sandy Siegel
1787 Sutter Parkway
Powell OH 43065-8806
USA
ssiegel@myelitis.org

Acute Disseminated Encephalomyelitis (ADEM)

The ADEM list is being compiled by Barbara Kreisler.  If you would like to be added to the list, please send your information to bkreisler.imprint@verizon.net.  An ADEM Directory will be published and mailed to everyone who is on the ADEM list.

Neuromyelitis Optica (NMO) or Devics disease

The NMO list is being compiled by Grace Mitchell.  If you would like to be added to the NMO list, please send your information to gmitchell@myelitis.org.  An NMO Directory will be published and mailed to everyone who is on the NMO list.