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 making a donation 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
What’s the 10/10/10 Campaign?
✔ 10 Reasons to Give – Every dollar helps provide resources, research, and support for Myositis patients.
✔ A minimum $10 Donation – A small gift with a BIG impact!
✔ Tell 10 People – Spread the word and inspire others to give!
Matching Gift Challenge Alert!
Thanks to a generous supporter, every donation up to $25,000 will be MATCHED! That means your $10 gift turns into $20, doubling the impact for Myositis patients.
10 Reasons to Give to Myositis Support and Understanding (MSU)
Patients First, Always
MSU is a patient-led, patient-driven organization, ensuring that those directly affected by myositis are at the heart of every decision, program, and advocacy effort.
Lifeline for Support
For 10 years, MSU has provided critical resources such as webinars, peer support groups, and direct access to trusted medical insights, helping patients navigate this rare disease.
Financial Assistance for Those in Need
Medical costs, mobility aids, and daily living expenses can be overwhelming. MSU’s financial assistance programs help ease the burden for Myositis patients in need.
Advocacy for Better Care & Treatment
We fight for stronger healthcare policies, increased research funding, and better access to treatments, ensuring that Myositis patients are not left behind.
Building a Stronger Community
Myositis can feel isolating, but no one should go through it alone. MSU fosters connection, empowerment, and representation through community-building initiatives.
Driving “Right Now Research”
Patients can’t wait for change! MSU is committed to accelerating research, clinical trials, and real-time data collection to fast-track better treatments and solutions.
Bridging the Gap Between Patients & Researchers
MSU ensures that real patient experiences and needs shape medical research, giving those with Myositis a voice in developing new therapies.
Fast-Tracking Industry & Research Collaboration
By partnering with biotech, pharma, and medical researchers, MSU works to bring new treatments from the lab to real people, faster.
Expanding Awareness & Education
Myositis is rare and often misunderstood. Through public awareness campaigns, professional education, and advocacy, MSU ensures more people understand and recognize this disease.
Every Dollar Counts, Every Gift Matters
Your donation directly supports myositis patients through education, financial aid, research, and advocacy. With MSU, you can SEE THE DIRECT IMPACT OF YOUR SUPPORT.
How You Can Help Right Now:
✅ Donate (at least) $10 – Every dollar counts!
✅ Ask 10 Friends – Share the campaign and challenge your network!
✅ Spread the Word – Post on social media, send a text, or share in your group chats!
Let’s rally together and make a difference for the Myositis community. Donate now and be a part of something incredible!
2nd Annual Myositis Moon Walk
The Myositis Moon Walk, a collaboration between Myositis Support and Understanding (MSU) and the Myositis Moon Walk team, aims to raise awareness and education about Myositis.
Join patients, care partners, families, and friends on May 2nd & 3rd 2025, at the U.S. Space and Rocket Center in Huntsville, AL for the 2nd Annual Myositis Moon Walk.
Registration is Open!
Get ready for liftoff! We’re excited to announce that registration is open for our two-day event! Join us for the Patient Voice Workshop at the beautiful Huntsville Botanical Gardens on May 2nd, and then for the 2nd Annual Myositis Moon Walk at the U.S. Space & Rocket Center on May 3rd. We’re providing free admission and lunch, but spaces are limited, so be sure to register by April 18th.
Just a reminder: you’ll need to register for each event separately, click the buttons below to register today. We can’t wait to see you there!
Meet Elisa Glass, MSU's First Ever Executive Director!
Celebrating 10 Years of Empowerment at Myositis Support and Understanding
Myositis Support and Understanding (MSU) marks a significant milestone as it celebrates its 10th anniversary and welcomes Elisa Glass as its first Executive Director. This new leadership reflects our unwavering commitment to enhancing the lives of Myositis patients and their care partners, showcasing a decade of growth and dedication in our mission.
Founded by Jerry Williams in 2015, MSU has continuously focused on empowering the Myositis community through direct support, advocacy, and impactful research. Elisa brings invaluable expertise and a personal connection to her role, fueled by her journey as a Dermatomyositis patient. Her background in public health and advocacy positions her perfectly to elevate MSU’s mission as we enter our next chapter.
With exciting initiatives on the horizon, including a Myositis educational summit and a return of the Myositis Moon Walk, MSU is poised to deepen its financial assistance programs and amplify legislative advocacy efforts. Our commitment remains steadfast: ensuring that every Myositis patient feels seen, heard, and supported.
As we celebrate this remarkable journey, we look forward to continuing our work with passion and purpose, ensuring no one navigates Myositis alone. Join us in this transformative moment, and stay tuned for what’s next at MSU!
Calling All Creative Minds! ✨
MSU is on the lookout for passionate volunteer content creators to join our social media and marketing team! If you love crafting engaging posts, telling compelling stories, and connecting with a community, we want to hear from you!
Your contributions will help raise awareness and support for our mission, making a real difference in the lives of those we serve.
Ready to make an impact? Submit your application today or click here for more details. Let’s inspire and uplift together!
#VolunteerOpportunity #ContentCreation #JoinOurTeam #MSUFamily #MakeADifference
Join Our Team as a Volunteer Graphic Designer!
Are you skilled in Canva or Postermywall and looking for an opportunity to make a meaningful impact? MSU is seeking a talented and creative graphic designer volunteer to help us craft engaging visuals and support our mission.
If you’re passionate about using your design skills for a great cause, we would love to have you on our team! Your creativity will play a pivotal role in enhancing our communication and outreach efforts.
Interested? Please reach submit your volunteer application or click here for more details. Let’s create something amazing together!
#VolunteerOpportunity #GraphicDesign #JoinOurTeam #MSUFamily #MakeADifference
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!
Check Out MSU's New Online Store!
We are excited to announce the launch of the Myositis Support & Understanding online retail store!
As an all-volunteer non-profit organization, we are passionate about supporting our myositis community. Our new store features thoughtfully curated products designed to inspire hope, raise awareness, and empower patients, care partners, and advocates.
Every purchase you make goes directly back into our community, helping us fund vital resources and initiatives for those affected by Myositis.
We invite you to explore our collections and find meaningful items that celebrate resilience and connection. Your support truly makes a difference!
Click the link below to check out our store and join us in making a positive impact. Thank you for being part of our journey! Together, we can spread hope and understanding.
#MSUStore #MyositisSupport #MSU #NonProfit #ShopForACause #CommunityCare
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
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
May 1 @ 1:00 pm - 2:30 pm ESTThe Patient Voice Workshop
May 2 @ 10:00 am - 4:00 pm CDT2nd Annual Myositis Moon Walk
May 3 @ 10:00 am - 4:00 pm CDTWeekly Sunday Clubhouse Support
May 4 @ 7:00 pm - 9:00 pm ESTMen with Myositis Clubhouse Support Room
May 5 @ 7:00 pm - 9:00 pm ESTSexual Intimacy with Myositis, “Exclusive for Women with Myositis Group”
May 5 @ 7:00 pm - 9:00 pm EDTWednesday Evening Myositis Patient Video Support
May 7 @ 7:00 pm - 9:00 pm ESTMyositis Support Gets Moving on Clubhouse
May 8 @ 1:00 pm - 2:30 pm ESTThe Unseen Grief: Recognizing & Healing from Secondary Loss Workshop
May 10 @ 2:00 pm - 3:30 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!
