About Us
The SistaMoon Foundation advocates for people who are disabled due to having Devic’s Disease. We write letters to insurance companies and Doctors as an advocate to help ensure treatment and services necessary for improvements are met. We help to locate Neurologists for people who do not have one that is knowledgeable in the area of Devic’s Disease. We facilitate consultations with PCP’s and or Neurologists with Neurologists that do have a vast knowledge in the area of Devic’s Disease.
We call and write letters to U.S. State Senators, Governors of individual states to help individuals who are on the waiting list for the Medicaid Waiver Program get services quicker. We have provided individuals with a sample justification letter. This is a letter that justifies why a person may need services or equipment as it relates to their disability. For example, you may need to justify why you need a standing frame or on-going physical or occupational therapy.
The Founder and CEO has personally called people who have Devic’s Disease just to listen, talk or motivate if needed. She also wrote to the Social Security Administration regarding adding Devic's Disease to the list of diseases/disorders to their "Compassionate Allowances" list.
Information obtained from
"Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly".
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 flyers 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.
Shelia Sheckles, the Founder and CEO, has a Bachelor of Arts Degree with a concentration in Criminal Justice and Political Science from Chicago State University. She worked in the field of Social Services for over twenty years.
Her daughter Dawn, prior to her diagnosis, was a CNA. She did attend college to become a Registered Nurse. However, she changed her mind at the age of twenty-seven and decided to change her career to journalism. She attended Estrella Mountain College in GoodYear Arizona. Her dream was cut short when she was involved in a car accident. The car accident derailed her ability to finish school. Six Months after the accident she became paralyzed and then diagnosed with Devic's Disease. Because of her daughter's diagnoses of Devic's Disease, her passion is to do everything in her power to bring awareness to this disease.
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 make sure that this disease is well known. Therefore, individuals will be able to identify the symptoms which will enable them to seek appropriate treatment during the early stages. Dr. Wingerchuk of the Mayo clinic reports that "accurate and early diagnosis is critical to facilitate initiation of immunosuppressive therapy for attack prevention". When Dawn was displaying the symptoms of Devic's Disease, her mother went on line to see if she could find out what was wrong with her. There was very little information. However, she found Optic Neuritis which is a symptom of Devic's Disease. Dawn's Neurologist at the time would not listen to Dawn or the family. With persistence, Dawn was able to get another Neurologist willing to help and research. After researching her symptoms, the new Neurologist concluded Dawn had Devic's Disease. However, the time wasted and the referral to the Mayo Clinic requested by the family took six months which put Dawn at risk for another episode rendering her paralyzed again.
When Dawn was seen at the Mayo Clinic in Scottsdale, Arizona by Dr. Jonathan Carter MD, he was able to detect that Dawn was not on the proper dosage of medication. He also recommended other treatment options which have greatly improved Dawn's quality of life. She has gone from a quadriplegic to a paraplegic and is constantly improving. Dawn's family thanked Dr. Carter for his patience, professionalism efficiency and concern. He is a blessing and it is the family's desire that he continues to practice Medicine for a very long time. The family would further like to commend him on his detailed, precise and helpful social and medical report. It must be noted that Dr. Carter also consulted via the telephone with Dr. Wingerchuk during Dawn's visit at the Mayo Clinic.
The SistaMoon Foundation welcomes the opportunity to earn your trust and ask that you
HELP
The SistaMoon Foundation spread the word regarding Devic's Disease and support the foundation by donating what you can. We accept all donations large and small. For those of you who can not make monetary donations, we ask that you PLEASE help by sharing this information with your Doctor, family and friends and by signing the "Bringing Awareness to Devic's Disease" Petition at
DISCLAIMER
Please make sure to check with your Doctor, Neurologist before making any medical decision. Information on this site is information found during the Founder & CEO's research of Devic's Disease. This disease has been known about in Europe since the 1800"s and was thought to be an Asiatic Disease. However, this disease is also common in Africa as well as Asia.
in order to use Information obtained from this site you must give credit to the individual authors and the information used must be consistent with bringing awareness to Devic's Disease.
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