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10 people are interested
Board Members for Myositis nonprofit
ORGANIZATION: Myositis Support And Understanding Association
Please visit the new page to apply.
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10 people are interested
A fast-growing non-profit focused on a group of rare autoimmune diseases, idiopathic inflammatory myopathy which we refer to in general as Myositis. We are seeking board members to help propel us to the next level. Our all-volunteer organization provides "from the Heart" support to patients, care partners, and family members impacted by Myositis. We host live online support, Facebook support groups, and our Myositis Community on Inspire, we provide financial assistance for patients, we have a robust patient-centered research program and we provide "Simply Put" education. We currently serve about 15,000 members. We team up with leaders in the research world to connect patients with medical studies, both pharmaceutical and functional.
Our goal is to help make patients and family members' daily lives better while living with this debilitating, and often intractable disease. No medical experience or relationship to the disease is necessary, only a willingness to help an underserved community of patients, a desire to learn, and time and eagerness to serve! Our board members are spread out all over the United States and meetings are held via conference call and/or video conference calling, so geographical location is not an issue. We have fun while accomplishing our mission, so we promise you will enjoy the work you do with us! Please join our enthusiastic team and make a difference in many lives!
You can learn more about us on our website, UnderstandingMyositis.org
More opportunities with Myositis Support And Understanding Association
No additional volunteer opportunities at this time.
About Myositis Support And Understanding Association
Location:
9125 N Old State Rd, Lincoln, DE 19960, US
Mission Statement
Our mission is to improve the lives and empower those fighting Myositis through education, support, awareness, advocacy, financial assistance, and access to research.
Description
Myositis Support and Understanding Association (MSU) is instrumental in improving the lives of people living with myositis (idiopathic inflammatory myopathies), a group of rare, complicated autoimmune muscle, skin, and often multi-organ diseases, through education, support, awareness, patient advocacy, access to research, and financial assistance.
MSU, founded by patients in 2015, is a fast-growing all-volunteer patient-led501(c)(3) nonprofit organization with the experience required to support and advocate for myositis patients and caregivers. Myositis affects the whole person and every aspect of their life. It’s rare, often disabling, and poorly understood by doctors. While research is ongoing, it is in a closed framework often missing the most important piece, the patient voice.
We advocate for the inclusion of the patient voice in research and clinical care, and we work to empower the community to acknowledge patients and caregivers as equals - a part of the team - in their healthcare management.
Technology is a driving force in our continued growth and success; educating, supporting, and connecting patients, caregivers, and family members with one another, and with doctors, researchers, clinical trials, partners, and patient-first focused providers.
The addition of our #MyositisLIFE program in 2019, with a dedicated interactive community-based website, provides a solution to a missing piece in awareness and research; the patient voice.
CAUSE AREAS
WHEN
WHERE
This is a Virtual Opportunity with no fixed address.
DATE POSTED
April 4, 2023
SKILLS
- Program Management
- Donor Management
- Fundraising
- Grant Writing / Research
- CSR / Volunteer Coordination
- Community Outreach
GOOD FOR
N/A
REQUIREMENTS
- Driver's License Needed
- Background Check
- Must be at least 18
- Orientation or Training
- 15-20 hours per month plus monthly board meetings
- Be willing to learn about Myositis and be enthusiastic about helping others.