SistaMoon Foundation, a non-profit patient advocacy organization, was created in Honor of the Founder and CEO'S Daughter Dawn Sheckles. In addition to honoring Dawn Sheckles, the Foundation was also created to 1. Bring awareness to Devic's Disease. 2. To help raise funds for research and support for individuals diagnosed and affected by this rare disease. 3. To advocate for Devic’s Survivors who can not advocate for themselves. 4. The Founder desires to help educate individuals regarding this disease, by providing information from some of the leading Doctors/Researchers who have a vast knowledge of this disease. Devic's Disease is also known as Neuromyelitis Optica (NMO). Dawn was diagnosed in September 2008.
Although the main goal of the SistaMoon Foundation is to bring awareness to Devic's Disease and advocate for Devic’s Disease Survivors, the Foundation also Advocates on behalf of people who are disabled due to other circumstances as well (Mental Health Issues and People who are in need of patient advocacy. The SistaMoon Foundation assists people, who have been denied Social Security Disability, through the appeals process.
The SistaMoon Foundation continues to bring awareness to Devic’s Disease, by educating the public about the disease. Education includes producing Public Service Announcements, handing out fliers and directing people to the Mayo Clinic and the Walton Clinic’s web-sites. We inform people on the history of the disease and the current diagnosis, treatment options available. In summary, we advocate, educate and raise funds for research and support.
Devic's disease is an inflammatory disease of the central nervous system in which there are episodes of inflammation and damage to the myelin (fatty, protective covering of nerves) that almost exclusively affect the optic (eye) nerves and spinal cord. It usually causes temporary blindness, occasionally permanent, in one or both eyes. It can also lead to varying degrees of weakness or paralysis in the legs or arms, loss of sensation, and/or bladder and bowel dysfunction from spinal cord damage.
For more information regarding Devic's Disease, please visit the SistaMoon website at www.sistamoonfoundationfordevicsdisease.org