Detailed description is Patient Alliance for Neuro-endocrine-immune Disorders Organization for Research and Advocacy. . . Thank you for your interest in Pandora Org. Our name is an acronym for Patient Alliance for Neuro-endocrine-immune Disorders Organization for Research and Advocacy. It is based on Pandora’s Box in Greek Mythology. When Pandora opened the box, disease and suffering spread into the world. The last thing that flew out was Hope. The butterflies represent the Hope of patients being released from their cocoon of disease.. . Pandora Org's Vision is: . . Restoring Quality Of Life to people with neuro-endocrine-immune diseases (NEIDs) such as Fibromyalgia, Myalgic Encephalomyelitis, Chronic Tick-borne Infections, Lyme Disease, or Environmental Illnesses.. . Pandora ORG's Core Values include:. • Create hope for a cure. • Strongly advocate for improved healthcare. • Empower patients through education. . SOME RECENT HAPPENINGS AND FACTS ABOUT PandoraORG.net . . • We have been a non-profit organization since 1988 and direct several empowerment groups throughout Michigan.. . • We speak out boldly at federal government advisory committee meetings on behalf of patient interests. . . • We were invited by the IOM (Institute of Medicine) to give a presentation to their committee. They took our presentation into consideration for their final report to the government and the Federal Drug Administration. . • We have a team visit Capitol Hill once month to meet with key legislatures about drug treatments for ME/CFS (there is currently no FDA- approved drug for ME/CFS).. . • We attend Senator Upton's 21st Century Cure meetings in Washington DC to make knowledgeable comments about ME/CFS and Fibromyalgia. • We were responsible for the FDA Stakeholder meeting in 2014 for ME/CFS. The Patients Voice report was the outcome.. . • We were asked by the IOM to help with disseminating that report to medical societies, such as the American Academy of Neurology etc. They preferred our organization to accomplish this task because we arrange education for physicians and others in the healthcare profession.. . • We look for other opportunities to arrange for physician education of NEIDS, as we did in Grand Raids, Michigan and Birmingham, Alabama. As physicians become more knowledgeable of these diseases, they will diagnose patients earlier and provide better health care. . . • We pay for Dr. Ruth Walkotten M.D. to attend the International Association for ME/CFS conferences to assist with her research and care management for patients throughout Michigan with this illness. (Dr. Walkotten is located in Muskegon, Michigan.). . • We give presentations to biology students about NEIDS. This plants a seed of knowledge and interest for those who may become nurses, physicians or researchers.. . • Through public service announcements, brochures and motivating governments to recognize May 12th as NEIDS Awareness Day, we increased attention to and public knowledge of these diseases.. . • We also have a Help and Info Line (231-421-8350).. . • We are funding research through our Research Report Webinars (In 2015, we contributed over $7,000).. . • Our website won an award for Best Organized.. . • Through our newsletters, Facebook page, Twitter, YouTube and other social media, we keep patients informed of advocacy opportunities and research findings.. . • Our Advocates Extraordinaire™ program trains patients along with their loved ones to be their own advocates when speaking to politicians and the news media.. . • Pandora Org is the only organization that assists patients directly. We have the Pandora Delivers™ meal program where fresh meals are delivered to help someone short term after a hospital stay or procedure. There is the Covered in Love quilt project where our quilting team has delivered over 50 handmade quilts to people going through rough times, or frightening treatments. There are also several other patient support projects in the works to be revealed soon.. . • We partnered with NeedyMeds to provide patients with low-cost medications.. . • We arrange special outings to help isolated patients keep an optimistic outlook.. . • We have monthly support group meetings all over Michigan for social interaction, patient education and of course, support. We encourage patients to feel free to speak out, laugh or cry with us. Of course, we offer hope, knowledge, and empowerment to speak with others about our illnesses so they can understand how to assist those of us who suffer with neuro-endocrine immune disorders.. . • When we can, we provide direct assistance to patients with electronics, gas cards or other items.. . You can find out more about Pandora Org through PandoraORG.net. . Our local Grand Raids support group meets every other 2nd Tuesday of the month, from 1-2:30pm at The Peter M. Wege Health & Learning Center, 300 Lafayette SE, Grand Raids, MI 49503.. . Simply park in the Wege parking ramp. Inside the building, follow the signs to rooms 7/9, one level down, across from the elevator. (Meetings are in February, April, June, August, October, and December).. . Meetings are open to patients, those in their support network and professionals who care. Please feel free to drop in and support us and yourself.. . . On to more vibrant health,. . Teresa Dutmer Phone: 616-308-9518 [email protected]. . Dawn Schutte Phone: 616-893-1564 [email protected] . .
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