Myasthenia Gravis (MG) is called the snowflake disease because, like snowflakes, everyone is unique. This makes it an especially difficult disease to both live with and diagnose. Our goal is to help you climb the mountain.
Own MG is revolutionizing the individual and clinical approach to myasthenia gravis through innovative education initiatives for patients, families, and providers. Through advocacy and awareness campaigns as well as supporting, implementing, and funding medical research for rare diseases, Own MG strives to enhance the lives of those affected by Myasthenia Gravis.
It is our vision to reach every patient and caregiver enabling them with the information and tools necessary to be fully empowered to advocate for their health with their providers. With education being at the forefront of what we do, we strive to increase understanding so that diagnosis can be streamlined and treatments can be optimized to achieve the best baseline of health possible. By funding research we will better understand the needs and objectives of the patient and find the gaps in the provider/ patient relationship.
Board of Directors
Education initiatives specifically designed to teach patients an in depth understanding of the pathophysiology of their disease, allowing them the opportunity to have better insight into their disease management and treatment plan to discuss with their provider. This allows them to better advocate for themselves as rare diseases are often not well known, especially in acute care management.
Own MG is designing National Education initiatives to assist patients virtually in becoming advocates within their community and to educate first responders about Myasthenia and acute care management.
Initiatives for studies based on common issues reported within the Mg community of patient’s struggles with their providers.
Creating a place for patients to share their story with individual profiles along with pictures and videos of their symptoms, providing examples of patient experiences that does not exist elsewhere.
Assistance programs to help patients achieve diagnosis (various ways may include travel expense to confer with specialists and funding for specialized tests)
Assistance program to provide home NIF Meters to patients who request them.
Own MG representatives plan to attend medical conferences, hospital educational forums, etc to educate providers on pertinent issues in myasthenia and sharing data and input from the MG community.
Hopes in the future:
Reform the ADL/QOL forms used in studies.