I have created the SistaMoon Foundation, a non-profit organization to help raise funds for research and support for individuals diagnosed and affected by the rare disease called Devic’s Disease.
My daughter Dawn was diagnosed in September 2008.
This foundation is necessary because this disease is so rare and under diagnosed as well as misdiagnosed. Although many are often misdiagnosed – 35% of African Americans are misdiagnosed with Multiple Sclerosis when they really have Devic’s Disease. Also 80-90% of individuals diagnosed with Devic’s Disease are women.
There are a few medical facilities in the United States including the Mayo Clinic, the Cleveland Clinic, Stanford University and San Francisco University that are dedicated to conducting scientifically valid clinical trials and research for this disease. According to the Walton Clinic in England, “it doesn’t make business sense to pharmaceutical companies to spend huge amounts of money on relatively rare illnesses.”
It is the goal of my foundation to bring awareness to this rare, demyelinating and often fatal disease to everyone especially every doctor in the United States and other areas around the world.
I am asking everyone please help bring awareness to this disease by sharing this information with your doctor, family, friends, Senators, Mayors, Governors, Congressmen/Woman. You can also contact the President, The first lady and Kathleen Sebelius Secretary of Health and Human Services as well a Kareem Dale the Special Assistant to the President regarding Disability policy.
Tell everybody you meet.
I am going to make everyone in the world aware of this disease and raise so much funds to help find better or more effective medication, a cure, to help prevent this disease by helping medical professionals, medical students, teachers, eye doctors and anyone I can identify recognize the signs of this disease.
Together we can make a difference.
Shelia Jean Sheckles-Bennett