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
Registration is NOW OPEN for the MYOCONNECT Summit!
We are excited to invite you to register now for the MYOCONNECT Virtual Summit, hosted by Myositis Support and Understanding (MSU) and sponsored by Cabeletta Bio. This landmark event marks the launch of the MYOCONNECT Education and Empowerment Forum, a new platform dedicated to putting patients’ voices first through trusted, patient-focused education and powerful resources.
Summit Date: August 30th | 11 AM – 6 PM EST
This year’s theme is “A Call to Action” — because after 10 years of supporting the Myositis community, this community is DONE waiting. It is time to move beyond patience and start creating waves of change together. Whether you are a patient, caregiver, medical professional, or advocate, this summit will equip you with the knowledge, tools, and inspiration to make your voice heard and spark real progress.
Join us for engaging sessions, inspiring speakers, and meaningful conversations that empower every member of the Myositis community
Register today to secure your spot: MYOCONNECT Summit
Be part of this historic moment — let us take action, together!
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 Graphic Designer!
Position: Volunteer Graphic Designer / Social Media Content Creator
Location: Remote
Reports To: Marketing Team Lead
Overview:
Myositis Support & Understanding (MSU) is on the lookout for a creative and passionate Volunteer Graphic Designer / Social Media Content Creator. If you are an aspiring designer looking to hone your skills and make a significant impact, this is the perfect opportunity for you! As part of our dynamic marketing team, you’ll play a crucial role in creating visually stunning graphics that enhance our outreach and engagement within the Myositis Community.
Key Responsibilities:
- Develop high-quality graphics for social media, our website, newsletters, and promotional materials, supporting individuals impacted by Myositis.
- Collaborate with the marketing team to craft engaging visual concepts that align with our mission and values.
- Assist in designing presentations for educational events to boost understanding and awareness of Myositis.
- Ensure all designs meet technical standards and deadlines, aiding in effective communication for MSU initiatives.
- Stay updated on design trends, offering fresh ideas to boost our visual storytelling.
- Incorporate feedback to refine designs and convey messages effectively to the Myositis Community.
- Contribute to creative brainstorming sessions to drive impactful marketing strategies.
Qualifications:
- Proficient in graphic design software like Adobe Creative Suite, Canva, or PosterMyWall.
- A strong portfolio with previous work, preferably in the health or non-profit sectors.
- Basic understanding of branding, typography, color theory, and layout design.
- Excellent communication and collaboration skills.
- Strong attention to detail and multitasking ability.
- A passion for empowering individuals with myositis through your design talents.
Benefits:
- Gain valuable hands-on experience in graphic design and marketing.
- Build your portfolio with meaningful and impactful projects.
- Collaborate with a team passionate about making a difference in the Myositis Community.
- Access networking and professional development opportunities in the non-profit healthcare sector.
How to Apply:
Eager to use your design skills to make a difference? We want to hear from you! Please submit your application [here] and upload your resume.
Join us in our mission to support the Myositis Community with visuals that inspire, educate, and connect those affected by this condition!
Join Our Team as a Volunteer Content Creator!
Position: Volunteer Video Editor
Location: Remote
Reports To: Marketing Team Lead
Overview:
Myositis Support & Understanding (MSU) is searching for a talented and detail-oriented Volunteer Video Editor to join our team. This role offers a fantastic opportunity for someone looking to gain hands-on experience in video editing while contributing to a meaningful cause. The volunteer will be responsible for editing recorded webinars, summits, conferences, and creating engaging marketing materials that support our mission to educate and empower the Myositis Community.
Key Responsibilities:
- Edit and produce high-quality video content from recorded webinars, summits, and conferences to ensure clarity and engagement.
- Collaborate with the marketing team to develop and execute video content strategies that align with MSU’s mission and goals.
- Enhance video and audio quality, insert graphics, transitions, and effects for polished final products.
- Assist in creating marketing and promotional video materials that effectively communicate our initiatives and impact.
- Work with team members to incorporate feedback and make necessary adjustments to video projects.
- Organize and manage the video archive for easy access to past projects and materials.
- Stay informed on the latest video editing techniques and software to keep our content fresh and relevant.
Qualifications:
- Proficiency in video editing software such as Cap Cut, Canva, Adobe Premiere Pro, Final Cut Pro, or equivalent tools.
- Strong understanding of video production techniques and storytelling through visual media.
- Ability to enhance audio and video quality and incorporate effects for professional results.
- Excellent attention to detail and commitment to producing high-quality work.
- Good communication and collaboration skills within a team-oriented environment.
- Passion for supporting the Myositis Community through creative and impactful video content.
Benefits:
- Gain valuable experience in video editing and production while supporting the mission of Myositis Support & Understanding.
- Build your portfolio with impactful video projects that raise awareness and support the Myositis Community.
- Collaborate with a team of dedicated professionals and advocates.
- Access opportunities for networking and professional growth within the non-profit and healthcare sectors.
How to Apply:
If you are excited to use your video editing skills to make a difference, we would love to hear from you! Please [click here to apply] and submit your portfolio and resume. Join us in our mission to support and empower the Myositis Community through engaging and informative video content!
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
Myositis Cancer Support
July 16 @ 7:00 pm - 8:30 pm EDTMyositis Support Gets Moving on Clubhouse
July 17 @ 1:00 pm - 2:30 pm ESTInternational Myositis Patient Support
July 19 @ 2:00 pm - 4:00 pm EDTWeekly Sunday Clubhouse Support
July 20 @ 7:00 pm - 9:00 pm ESTMyositis Reads – A Book Club for Those with Myositis
July 21 @ 3:00 pm - 4:30 pm ESTCouch Critics
July 23 @ 7:00 pm - 8:00 pm EDTMyositis Support Gets Moving on Clubhouse
July 24 @ 1:00 pm - 2:30 pm ESTIBM Patient Video Support
July 25 @ 5:00 pm - 7:00 pm ESTFinding Our Balance: Navigating Myositis & Dysautonomia
July 26 @ 3:00 pm - 4:00 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!
