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Board Members for Myositis nonprofit

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ORGANIZATION: Myositis Support And Understanding Association

  • 10 people are interested
Myositis Support and Understanding logo
Myositis Support and Understanding logo

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 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!

Key Responsibilities:

  • Provide governance and oversight aligned with MSU’s mission

  • Participate in strategic planning and financial oversight

  • Support fundraising efforts and leverage personal/professional networks

  • Serve as an advocate and ambassador for MSU

  • Help recruit new board members and evaluate organizational leadership

Ideal Candidates:
We’re looking for individuals with leadership experience in business, government, philanthropy, or the nonprofit sector. A strong commitment to MSU’s mission, along with skills in fundraising, finance, advocacy, and community engagement, is essential.

Commitment:
This is a volunteer position. Board members attend bi-monthly meetings, contribute to committee work, and engage in events, fundraising, and strategic planning activities. It’s a meaningful opportunity to grow, lead, and make a difference.

Apply today to help shape the future of MSU!

You can learn more about us on our website, UnderstandingMyositis.org

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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, 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 spokesman, access to research, and financial assistance.

MSU, founded by patients in 2015, is a patient-led 501(c)(3) nonprofit organization with the experience required to support and stand up 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 want 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.

CAUSE AREAS

Board Development
Community
People with Disabilities
Board Development, Community, People with Disabilities

WHEN

We'll work with your schedule.

WHERE

This is a Virtual Opportunity with no fixed address.

SKILLS

  • Program Management
  • Fundraising
  • Grant Writing / Research
  • Financial Literacy
  • Community Outreach
  • Business Planning

GOOD FOR

N/A

REQUIREMENTS

  • Driver's License Needed
  • Background Check
  • Must be at least 18
  • Orientation or Training
  • 5-10 hours per month plus monthly board meetings
  • Be willing to learn about Myositis and be enthusiastic about helping others.

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