Causes: Health, Nerve, Muscle & Bone Diseases Research
Mission: Improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, patient financial assistance, and access to research. We are an all-volunteer, all-virtual, patient-led nonprofit organization that leads with love and understanding.
Results: We have continued to build a strong network of myositis patients and caregivers, providing them the educational, financial, and emotional support they deserve in dealing with a group of rare, debilitating autoimmune muscle diseases, the Idiopathic Inflammatory Myopathies (IIM). Living with a rare and chronic illness affects all aspects of life, including causing financial hardships for many patients. Our financial assistance program helps patients directly and since the official launch of the program in 2017, we have awarded over $250,00 for medical bills, emergency household expenses, mobility and assistive devices, and medical travel. We continue to partner with other organizations, researchers, academia, and the pharmaceutical industry to provide myositis patients access to research. In addition, we partner with companies outside of traditional research whose work impacts and may benefit myositis patients and caregivers. An example is Plasma Services Group (PSG), which offers paid plasma and blood donation opportunities for patients for medical research. Education is a key component of our mission, and we give it away freely! We have a comprehensive myositis website as well as a new interactive platform for patients and caregivers to share their experiences living with myositis - MyositisLIFE. org. Since our start in mid-2015, we embraced how to bring true patient support using technology, knowing it would provide the tools necessary to make the myositis community stronger, better educated and informed about the disease, and actively involved in managing one's own health and wellness. We organize and host live webinars, Zoom and Clubhouse real-time support sessions, and provide top-notch patient and caregiver support in the Myositis Support Community, in partnership with Inspire. Patient-Centered Research HighlightsThe MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in Rheumatology and MSU is proud to make the paper available to you at no cost. We are founding partners in the AllStripes Inclusion Body Myositis and Dermatomyositis programs and encourage you to join to help accelerate research. We invite you to join us at MSU in making a real difference in the lives of myositis patients and caregivers. Visit https://Understandingmyositis. orgAnd learn more about our Patient-Centered Research at https://understandingmyositis. org/research.
Target demographics: Myositis Community
Direct beneficiaries per year: over 15K myositis patients and caregivers with support, education, and connections, and awarded over $80K in financial assistance in 2021
Geographic areas served: United States
Programs: myositis patient financial assistance, myositis "Simply Put" education, rare disease patient advocacy, numerous patient and caregiver support options including 7 monthly Zoom support sessions, 2 weekly sessions in our new Club on Clubhouse, and 4 Facebook groups, and a community on Inspire. We also provide access to research and clinical trial matching and empowering volunteer opportunities for anyone interested.
Mission: Improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, patient financial assistance, and access to research. We are an all-volunteer, all-virtual, patient-led nonprofit organization that leads with love and understanding.
Results: We have continued to build a strong network of myositis patients and caregivers, providing them the educational, financial, and emotional support they deserve in dealing with a group of rare, debilitating autoimmune muscle diseases, the Idiopathic Inflammatory Myopathies (IIM). Living with a rare and chronic illness affects all aspects of life, including causing financial hardships for many patients. Our financial assistance program helps patients directly and since the official launch of the program in 2017, we have awarded over $250,00 for medical bills, emergency household expenses, mobility and assistive devices, and medical travel. We continue to partner with other organizations, researchers, academia, and the pharmaceutical industry to provide myositis patients access to research. In addition, we partner with companies outside of traditional research whose work impacts and may benefit myositis patients and caregivers. An example is Plasma Services Group (PSG), which offers paid plasma and blood donation opportunities for patients for medical research. Education is a key component of our mission, and we give it away freely! We have a comprehensive myositis website as well as a new interactive platform for patients and caregivers to share their experiences living with myositis - MyositisLIFE. org. Since our start in mid-2015, we embraced how to bring true patient support using technology, knowing it would provide the tools necessary to make the myositis community stronger, better educated and informed about the disease, and actively involved in managing one's own health and wellness. We organize and host live webinars, Zoom and Clubhouse real-time support sessions, and provide top-notch patient and caregiver support in the Myositis Support Community, in partnership with Inspire. Patient-Centered Research HighlightsThe MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in Rheumatology and MSU is proud to make the paper available to you at no cost. We are founding partners in the AllStripes Inclusion Body Myositis and Dermatomyositis programs and encourage you to join to help accelerate research. We invite you to join us at MSU in making a real difference in the lives of myositis patients and caregivers. Visit https://Understandingmyositis. orgAnd learn more about our Patient-Centered Research at https://understandingmyositis. org/research.
Target demographics: Myositis Community
Direct beneficiaries per year: over 15K myositis patients and caregivers with support, education, and connections, and awarded over $80K in financial assistance in 2021
Geographic areas served: United States
Programs: myositis patient financial assistance, myositis "Simply Put" education, rare disease patient advocacy, numerous patient and caregiver support options including 7 monthly Zoom support sessions, 2 weekly sessions in our new Club on Clubhouse, and 4 Facebook groups, and a community on Inspire. We also provide access to research and clinical trial matching and empowering volunteer opportunities for anyone interested.
contact@UnderstandingMyositis.org
9125 N Old State Road c/o MSU, Lincoln, DE 19960
888-696-7273
Health
Lincoln
