Volunteer Communication Lead

Myositis Support and Understanding (MSU) is a leading non-profit dedicated to empowering and advocating for individuals affected by myositis, a group of rare autoimmune diseases. We provide vital resources, foster community, and raise awareness to improve the lives of those living with these challenging conditions.

We're looking for a passionate and creative Volunteer Communication Lead to join our volunteer Outreach & Engagement Team on a part-time basis. At MSU you are not only a volunteer, but you are also part of a family who cares about one another. We welcome everyone to join us and here, if you have a knack for visual storytelling and a desire to make a real impact, we encourage you to apply!

Responsibility

The Volunteer Communication Lead will develop and implement MSU’s communication strategy to ensure clear, consistent, and mission-driven messaging across all channels.

This includes managing internal and external communications, overseeing content creation and brand compliance, and supporting MSU’s outreach and advocacy initiatives.

The position may also provide communication and administrative support to the Outreach & Engagement Team Lead and MSU leadership.

Principle Duties

• Develop and execute comprehensive communication strategies aligned with MSU’s mission.
• Maintain editorial calendars for newsletters, social media, websites, and press releases.
• Ensure brand and message consistency across all communication platforms.
• Write, edit, and review content, including newsletters, press releases, website updates, and patient stories.
• Oversee internal communications to keep volunteer teams informed and engaged.
• Serve as primary point of contact for media inquiries and coordinate press opportunities.
• Collaborate with Content Coordinator and Social Media Specialist to align messaging.
• Monitor engagement and media metrics to evaluate communication effectiveness.

Qualifications

The following are considered key job qualifications:

• Experience in communications, public relations, or marketing.
• Strong writing, editing, and project management skills.
• Proficiency with digital communication tools (e.g., Mailchimp, WordPress, Microsoft Teams).
• Knowledge of HIPAA and patient privacy standards in healthcare communications.
• Bachelor’s degree in communications, journalism, or a related field preferred.
• Personal or family experience with myositis or other chronic/rare diseases is desirable.

Benefits

• Opportunity to contribute to a meaningful mission and make a difference in the community
• Flexible scheduling and remote work environment
• Access to training and skill development opportunities
• Supportive, collaborative, and inclusive team culture
• Experience in strategic communication, media relations, and brand management.