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!
Welcome to Myositis Awareness Month!
We celebrate the incredible strength and resilience of every individual living with Myositis. This month, we’re highlighting that Myositis isn’t just a diagnosis; it’s a journey filled with challenges, triumphs, and powerful stories of hope and determination.
Sharing our stories is crucial for breaking the stigma surrounding this invisible illness. Through personal narratives and inspiring graphics, we can enlighten our friends, family, and communities. These visuals are more than just beautiful images—they’re tools of empowerment designed to amplify our voices and ignite meaningful conversations.
By downloading and sharing these graphics on your personal pages, you play an active role in spreading awareness and education. You can find these graphics below. By sharing them, you’re not only telling your story but becoming the hero of your own narrative. Each story makes a difference, reinforcing that no one walks this path alone.
Join us in this powerful movement. Let’s shine a light on Myositis and support one another in demonstrating that every Myo story matters. Together, we are stronger, and together we affirm that My Myo Story Matters: Be the hero of your own story.
Thank you for being an integral part of this community. Let’s keep spreading awareness and understanding, reinforcing that we are more than our diagnosis—we are the heroes in our own stories.
Check Out MSU's Online Store!
Celebrate May Myositis Awareness Month with our inspiring new collection, “My Myo Story Matters: Be the Hero of Your Own Story.” Designed to empower and uplift, this collection embodies the strength and resilience of the Myositis community. Each piece in this exclusive line invites you to embrace your personal journey and share your story with pride.
Featuring a range of stylish apparel and accessories, our collection highlights the importance of awareness and advocacy. From comfortable t-shirts and cozy hoodies to eye-catching totes, water bottles, mugs, and tumblers, every item serves as a testament to the bravery and courage of those living with Myositis.
Join us in raising awareness and spreading hope by wearing your story proudly. Let your journey inspire others and stand united in the fight against Myositis. Explore the “My Myo Story Matters” collection today and be the hero of your own story. Click the link below to check out our store and join us in making a positive impact. Together, we can make a difference.
#MSUStore #MyositisSupport #MSU #NonProfit #ShopForACause #CommunityCare #MyMyoStoryMatters
Are you looking for a meaningful way to give back to the Myositis community? Myositis Support and Understanding (MSU) is seeking 2 volunteers to join our Financial Assistance Team as a Specialist to assist with screening and evaluating applications, managing communications with applicants and the assistance team, and providing follow-up support to applicants.
We are looking for individuals who have a passion for helping others and a commitment to making a difference. The ideal volunteer for this position will have excellent communication and organizational skills, the ability to work independently and as part of a team, is detail-oriented, and have strong interpersonal skills. We also value experience in data management, Microsoft products, and customer service. This position will require you to have a computer or laptop to use some of the programs, as well as antivirus protection.
This is an unpaid long-term volunteer position and requires a minimum commitment of 4-6 hours per week. The work you will do will directly impact individuals and families impacted by Myositis who need financial assistance, and your efforts will help them to improve their quality of life.
Some benefits to our volunteers include:
- Volunteer virtually from home or anywhere,
- Office 365 Software
- Access to training and development opportunities,
- Flexible scheduling,
- A supportive and collaborative team environment,
- The chance to make a difference in the lives of people living with Myositis.
If you are interested in applying, please submit your application online and include your resume.
We look forward to hearing from you!
Join Our Social Media Marketing Team!
MSU is searching for a creative volunteer to enhance our outreach efforts! If you’re familiar with Mailchimp and have a knack for crafting engaging emails, we would love to have you on our team!
Your writing will help us connect with our members and share important updates, resources, and support. Together, we can keep our community informed and inspired!
Interested? Submit your volunteer application or click here for more details. Let’s create meaningful communication together!
#VolunteerOpportunity #EmailMarketing #JoinOurTeam #MSUFamily #ConnectWithUs
MSU is Seeking Passionate Volunteers!
We are seeking volunteers with special skills and experiences and from diverse backgrounds. Whether you are interested in moderating support groups, as a bookkeeper, working on administrative tasks, or project planning, or you have an interest and background in patient-centered research.
Many at-home volunteer opportunities are available RIGHT NOW as we continue to grow.
Volunteering helps us, but it also helps improve mental health. When you volunteer with MSU you are a part of a family. Submit your application today!
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 Support Gets Moving on Clubhouse
June 19 @ 1:00 pm - 2:30 pm ESTInternational Myositis Patient Support
June 21 @ 2:00 pm - 4:00 pm EDTWeekly Sunday Clubhouse Support
June 22 @ 7:00 pm - 9:00 pm ESTCouch Critics
June 25 @ 7:00 pm - 8:00 pm EDTMyositis Support Gets Moving on Clubhouse
June 26 @ 1:00 pm - 2:30 pm ESTIBM Patient Video Support
June 27 @ 5:00 pm - 7:00 pm ESTNecrotizing Myopathy Patient Video Support
June 28 @ 7:00 pm - 9:00 pm ESTWeekly Sunday Clubhouse Support
June 29 @ 7:00 pm - 9:00 pm ESTWednesday Evening Myositis Patient Video Support
July 2 @ 7:00 pm - 9:00 pm EST
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!
