Myositis Support Starts Here!
At Myositis Support and Understanding (MSU), for the last 10 years, we have been dedicated to making a profound impact on the lives of patients and care partners affected by the rare and complex group of immune-mediated muscle diseases known as myositis. This condition can have far-reaching effects, impacting not only the muscles but also the skin, heart, lungs, and digestive tract, often accompanied by significant pain.
Our supportive programs offer not just educational resources, but also groundbreaking, patient-centered research that aims to transform lives. We are proud to provide a unique financial assistance program, ensuring that no Myositis patient is ever turned away due to lack of funds.
We are proud of what we have achieved together, but with your involvement, we can amplify our efforts even further. We invite you to consider donating to support our mission. Sharing our resources with your friends and family can also make a significant difference in our fight for awareness, understanding, and research.
Together, we can empower our community and drive meaningful change for those affected by myositis. Thank you for being part of this vital journey with us and here is to the next 10 years and all we can accomplish!
#SupportStartsHere #RightNowResearch #MyositisCommunity
2nd Annual Myositis Moon Walk
Watch The Live Stream Recording!
Join us for the inspiring recording of the 2nd Annual Myositis Moonwalk LiveStream! Held on May 3rd at the iconic U.S. Space & Rocket Center in Huntsville, Alabama, this event brings together a passionate community dedicated to raising awareness and supporting those affected by myositis.
Watch as our speakers share powerful stories, groundbreaking research updates, and exciting fundraising activities — all from the heart of America’s space history. Whether you missed the live event or want to revisit the motivation and hope shared that day, this recording is a must-see for supporters, patients, families, and anyone interested in making a difference.
Together, we are reaching for new heights in the fight against myositis. Tune in and be inspired!
Join Our Team as a Volunteer Email Marketing Specialist!
Location: Remote
Reports To: Marketing Team Lead
Overview:
Myositis Support & Understanding (MSU) is seeking a detail-oriented and motivated Volunteer Email Marketing Specialist to join our marketing team. In this role, you will assist in managing our MailChimp email campaigns to effectively communicate with our community, share valuable information, and promote our programs and initiatives. This is a fantastic opportunity for someone looking to gain experience in email marketing while making a meaningful impact on the lives of individuals affected by Myositis.
Key Responsibilities:
- Assist in the creation, scheduling, and performance tracking of email campaigns using MailChimp.
- Collaborate with the marketing team to develop engaging email content that resonates with our audience of patients, caregivers, and healthcare professionals.
- Design visually appealing email templates that align with MSU’s branding and messaging strategy.
- Segment email lists to ensure targeted messaging meets the preferences and needs of various audience segments.
- Monitor email campaign performance through analytics, including open rates, click-through rates, and engagement metrics; provide insights and recommendations for improvement.
- Ensure compliance with email marketing best practices and applicable regulations, including CAN-SPAM and GDPR.
- Maintain and update our email contact database, ensuring data accuracy and proper organization.
- Participate in brainstorming sessions to develop email marketing strategies that promote awareness and engagement within the myositis community.
Qualifications:
- Familiarity with email marketing platforms, particularly MailChimp, and a good understanding of email marketing best practices.
- Strong writing and editing skills, with an eye for detail in both content and design.
- Ability to analyze performance metrics and translate data into actionable insights.
- Basic graphic design skills are a plus, especially in creating visually appealing email layouts.
- Excellent organizational and time management skills, with the ability to manage multiple projects and meet deadlines.
- Passion for supporting individuals affected by myositis and a desire to contribute to meaningful communication efforts.
- Previous experience in marketing, communications, or related fields is a plus but not required.
Benefits:
- Gain hands-on experience in email marketing and digital communications while supporting the mission of Myositis Support & Understanding.
- Build your portfolio with impactful email campaigns that engage and inform the myositis community.
- Collaborate with a dedicated team of professionals and advocates who are passionate about making a difference in the lives of those affected by myositis.
- Opportunity for networking and professional development in the nonprofit and healthcare sectors.
How to Apply:
If you are excited about using your skills in email marketing to make a difference in the myositis community, we would love to hear from you! Please submit your application here and your resume.
Join us in our mission to connect, support, and empower the Myositis Community through effective email communication!
Join Our Team as a Volunteer Social Media Content Creator!
Location: Remote
Reports To: Marketing Team Lead
Overview:
MSU is seeking a passionate and creative volunteer to serve as a Social Media Content Creator. Your role will be to develop engaging, informative, and inspiring content across our social media platforms to raise awareness, promote our programs, and cultivate a supportive online community for those affected by myositis.
This is a wonderful opportunity to use your creativity and communication skills to make a real difference in the lives of patients, caregivers, and supporters around the world.
Responsibilities:
- Create and implement a content calendar for platforms such as Facebook, Instagram, Twitter, TikTok, and LinkedIn.
- Design eye-catching graphics, videos, and written posts that align with MSU’s mission and branding.
- Craft compelling captions and stories that resonate with our diverse community.
- Collaborate with our team to generate fresh ideas and campaign themes.
- Engage with followers by responding to comments and fostering a positive, supportive online environment.
- Track and analyze social media performance, and suggest ideas for improvement.
- Keep up with current social media trends and platform updates to keep our content relevant.
Qualifications:
- Experience with social media platforms and content creation tools (such as Canva, Adobe Creative Suite, TikTok, etc.) is a plus.
- Strong writing and visual communication skills with good attention to detail.
- Ability to produce consistent, high-quality content.
- Creative thinker with a passion for storytelling and community engagement.
- Self-motivated, organized, and able to manage your time effectively.
- Genuine interest in supporting MSU’s mission and community.
Benefits:
- Gain valuable experience in digital marketing and social media management.
- Contribute to raising awareness and providing support for those affected by myositis.
- Build your professional portfolio.
- Connect with a passionate team dedicated to a meaningful cause.
How to Apply:
If you’re excited to share stories that inspire and inform, we want to hear from you! Please submit your resume, samples of your work or portfolio, and a brief statement explaining your interest in volunteering with MSU.
Help us tell our story—together, we can make a difference in the myositis community!
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assistance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. The program is available to U.S. residents. See full details available in our help guide.
At MSU, we are patients and caregivers, too. We started with support, and with our support programs, you will find a family. Join us for myositis patient and caregiver groups, Zoom support, and rooms on Clubhouse. You are NOT alone in this journey.
We believe in the patient-centered research approach – putting the patient at the center of any collaboration with industry, academia, and government agencies to improve the quality of life of ALL affected by myositis. Learn more about the research we are involved in, the impact it can have, and how you can get involved.
Watch recordings of our expert-led myositis educational videos to learn more about the various types of myositis and other myositis-related topics and patient opportunities. New videos just added!
MSU's Pain Paper
The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in the prestigious journal, Rheumatology and MSU is proud to make the paper available to everyone at no cost. Share with your doctors. Myositis Pain is Real!
Myositis News and Updates
Upcoming Myositis Support & Events
IBM Patient Virtual Support Group
September 26 @ 5:00 pm - 7:00 pm ESTFinding Our Balance: Navigating Myositis & Dysautonomia
September 27 @ 3:00 pm - 4:00 pm EDTNecrotizing Myopathy Patient Video Support
September 27 @ 7:00 pm - 9:00 pm ESTWeekly Sunday Clubhouse Support
September 28 @ 7:00 pm - 9:00 pm ESTZeen Mobility Devices Virtual Webinar
September 29 @ 1:00 pm - 1:30 pm EDTWednesday Evening Myositis Support Group
October 1 @ 7:00 pm - 9:00 pm ESTMyositis Support Gets Moving on Clubhouse
October 2 @ 1:00 pm - 2:30 pm ESTWeekly Sunday Clubhouse Support
October 5 @ 7:00 pm - 9:00 pm ESTMen with Myositis Clubhouse Support Room
October 6 @ 8:00 am - 5:00 pm EDT
Are you living with myositis?
There are many empowering opportunities for myositis patients. Get involved, advocate and educate, and be a part of traditional and unique patient-focused medical research, and more!
