SistaMoon Foundation for Devic’s Disease

As with most people, I became aware of Devic’s Disease or Neruromyelitis Optica (NMO), because someone I know was diagnosed with the disease.  The road to NMO was not an easy one.  My daughter, who is a survivor of NMO, was like many others, misdiagnosed.  Because of her misdiagnosis, she had an acute attack that has left her a paraplegic.  NMO has affected my life, as well.  Due to my daughter’s disability, I have been unable to return to my career, hobbies or other things that used to bring me joy.  However, instead of letting this disease take over my life, I decided to become an advocate for my daughter.  I created SistaMoon Foundation to help raise funds for research and support for those affected by NMO.  The SistaMoon Foundation is based on the belief that everyone deserves to be educated and well informed when it comes to their health.  It is important to me to make sure that information about NMO is disseminated throughout the world.

I created SistaMoon Foundation, a non-profit charitable organization, for many reasons:  first, to bring awareness to Neuromyelitis Optica;  second, to help raise funds for research and support for individuals diagnosed and affected by this rare disease;  third, to advocate for NMO survivors who are unable to advocate for themselves;  fourth, my desire to help educate individuals regarding this disease, by providing information from some of the leading researchers and physicians who have the best knowledge of NMO.  My daughter, Dawn, was diagnosed in September 2008.

This foundation is necessary because NMO is so rare and under diagnosed, as well as misdiagnosed as Multiple Sclerosis (MS).  Although there are many who are misdiagnosed, 35% of African Americans are misdiagnosed with MS when they really have NMO.  According to the Walton Centre Medical Services in England, “80-90% of people with Neuromyelitis Optica are women.”

I challenge everyone who knows about this disease to tell everyone they know and to encourage them to tell someone else.  Before we know it, we will raise awareness and the road to a cure and prevention will be paved.

Shelia Jean-Simone Sheckles-Bennett
Founder & CEO
SistaMoon Foundation
(702)684-7691
simonesheckles@yahoo.com 
www.sistamoonfoundationfordevicsdisease.com