Patient Representative Summary
The Board of Directors for the MSA Coalition serves as the strategic direction-setting body, stewards of resources and allocation, and overall programming oversight. The Patient Representative shall serve as a fiduciary of the organization, working with other members of the Board and staff to realize the MSA Coalition’s mission, vision, and overarching strategy.
You will have a unique opportunity to impact multiple system atrophy patients, caregivers, research, and the entire community. As a strategic leader with the MSA Coalition, your talent, energy, and dedication will help the organization meet our strategic goals and objectives. You will engage with passionate individuals who this rare disease has touched, and you are driven to help those in need and work towards finding a cure.
- A current patient with multiple system atrophy.
- Ability to attend all MSA Coalition virtual board meetings.
- Ability to attend the MSA Annual Conference. Note: 2022 will be a virtual event held Sept. 29-Oct. 1, with 2023 planned to resume as an in-person meeting.
- Commitment to make an annual personal financial contribution to the Coalition commensurate with financial means.
- Ability to engage in MSA Coalition leadership communications via email or online forums in a timely manner.
Highly Desired Competencies, Skills, and Attributes
Desired experience, skills, and interests include but are not limited to:
- Demonstrated MSA Coalition volunteer experience
- Business expertise
- Relevant educational background
- Financial/accounting proficiency
- Fundraising capacity
- Leadership skills
- Marketing/media knowledge
- Non-profit volunteer experience
- Patient/caregiver support
- Social media presence
- Volunteer network building
- Collaborative spirit
- Strong communication skills
- Commitment to the MSA Coalition’s mission
Summary of General Role and Responsibilities
- Serves as a fiduciary of the organization
- Provide a patient perspective and insight into the MSA Coalition strategy
- Participates in collaboration with officers and board members in the general oversight of the affairs of the MSA Coalition
- Support MSA Coalition Committees, task forces, or work groups at the appointment of the MSA Coalition Chair
- Individuals should be prepared to develop relationships, identify, and solicit potential funders, and directly invest in the Coalition’s work through personal donations within their means.
- Performs other duties as assigned by the Board and/or Executive Committee
- Must attend Board orientation sessions, held virtually
- Must attend the 2023 MSA Coalition board meeting held in conjunction with the Annual Conference
- Attend four or five virtual board meetings throughout the year
- Additional time commitment may vary based upon assignment and responsibilities
- The estimated average monthly time commitment is 4 to 10 hours per month
The Patient Representative term is a one (1) year commitment, with an option to renew for one additional term for a total of two (2) consecutive years.
Please submit your completed application by October 25, 2022.