We know you have questions so here are some answers!
As with any organization, our members and visitors have questions. We have attempted to answer some of the most common questions we have received, as well as provided links to some helpful resources we have created.
If your question is not answered below, please feel free to contact us.
Myositis-specific Frequently Asked Questions
We offer detailed education about Myositis, its subtypes, and common overlaps in our Explore Myositis section. This is a part of our “Simply Put” series, written in language you can understand.Learn more about Myositis
We offer a few ways for you to meet others living with Myositis. We have Facebook Support Groups, our website’s Myositis Network, and our online Video Chats. You can find more detailed information by visiting our myositis support options page.More info about Myositis Support options
Check out our “Tips for Finding a Doctor” page for more information about finding doctors who are experienced diagnosing and treating Myositis.Tips for Finding Doctors
There is no cure available for any form of Idiopathic Inflammatory Myopathy (Myositis). However, some patients are able to achieve remission (no active disease).
The body’s immune system fights infections, viruses, bacteria, and other harmful things. Your immune system produces antibodies and white blood cells, called lymphocytes, to help fight off the above mentioned harmful things, a process known as an immune response.
Someone with an autoimmune disorder has an overactive immune response; one that treats your body’s normal, healthy tissues as foreign invaders like a virus for example. It is a misdirected response.
In the Inflammatory Myopathies, these overactive immune cells target the muscles, skin, and for some, other organs, causing inflammation. View the items in our Explore Myositis section to learn more detailed information.
While there are not any Myositis-specific resources for Veterans, we have compiled a listing of helpful resources for Veterans. And, we want to thank you for your service.Veterans Resources
Myositis, for some, can be a highly debilitating disease that may require patients to leave the workforce prior to retirement age thus needing to apply for Social Security Disability Insurance (SSDI). We have created an entire directory of disability resources to help you through the process.Disability Resources
Not too many years ago, exercising with Myositis was not advised, however, based on recently-published research, it has become apparent that exercise is recommended for a variety of reasons at any stage of Myositis, but it is not as simple as going out on your own and training for a half marathon. It is best to consult with your medical team to have them set you up with an exercise plan.
General Frequently Asked Questions
What an excellent question but one that includes so much detail. Of course, we are committed to our Mission and Vision which we didn’t agree on lightly.
Some of our main goals include education, support, awareness, advocacy, and financial assistance for patients. We also hope to, at the end of each year, provide funds directly to other Myositis-related organizations for research purposes.Check out our programs and services
As you may already know, MSU is a completely volunteer-managed organization. We love that you are interested in donating your time to help.
To volunteer, simply fill out the volunteer form and confidentiality agreement and we will be in touch to get you started working together with us.Sign up to Volunteer
We are always looking for excellent candidates for our all-volunteer Board of Directors. If you have experience and are willing to be a part of a fast growing organization, you can apply by filling out the application and submitting it along with your resume or CV to our attorney, Scott Filmore. The instructions are on the application. See more about what we are looking for!See more about Joining the Board
Member Fundraising Campaigns tend to bring in a lot of attention, awareness, and funding. If you are interested in hosting your own fundraiser we would love to know so we can help to support you through the process. There are so many ways to fundraise and we are happy to work together with you.Launch your own Fundraiser
Clinical Trials can be found in various ways, from web searches to specific URLs. MSU has teamed up with Center Watch to host an industry-sponsored search engine of clinical trials just for Myositis.
You can also find clinical trials through the NIH website at https://www.clinicaltrials.gov/Search Myositis Clinical Trials
TMA has decided to honor Myositis Awareness Month in May instead of September. We have discussed our options and have decided to join them to help make a bigger impact together! This May (and in the weeks leading up to it) you will have multiple opportunities to participate in Myositis Awareness Activities.Join MSU for Myositis Awareness Month, May
We sincerely thank you for your generosity! To donate by mail simply make your check payable to MSU and mail it to 9125 N. Old State Road, Lincoln, DE 19960.
MSU is a stand-alone nonprofit organization built from the ground up starting in 2014. We are not a part of any other organization. We were founded by myositis patients for myositis patients.
As a part of our Mission and Vision, we want to work closely with other nonprofits that share our same values. Some we hope to include are AARDA, MDA, CureJM, TMA, and the Team Tommy Foundation.
If you have an organization that you feel would work great together with us, please be sure to let us know.
Website Features, Frequently Asked Questions
When you become a member of MSU, our Myositis Network feature is automatically included. This is basically a Myositis social network hosted directly on our website and contains several components including privacy settings, profile visibility options, groups, and personalization settings.
You may want to visit our complete Network Help Section for more information and help.Visit the Network Help Section
We take your privacy seriously. When you first register to become a member, each field provides you the opportunity to change who will see it. If you didn’t change the settings there, visit your profile page, click on the “plus” sign (drop down menu appears) and click on “Settings.”
Under this option, you will see two links of interest: Profile Visibility and Privacy.
This option lists all profile fields and allows you to change who can see them. Select an option for them all or for just a few. Be sure to click “Save” when completed.
An example: If you don’t want anyone to see your date of birth, set that field to “Only Me.”
NOTE: These fields link together. So, if you hide your diagnosis others will not be able to search you by that field.
This option allows you to set who can see you in our community.
- Private: Your profile is visible only to you.
- Friends: Only visible to those you have accepted as friends in the network.
- Logged in Users: Visible to any users that are logged in to the website.
- Public: Visible to anyone whether they are a member or not.
Logged in Users is the optimal field so that you can be found by others in the network and interact with them.
You can visit your profile by clicking on your image, when logged in, in the top right section of our site.Visit the full Network Help Section
We have had many requests over the years to allow members to post their businesses in our Facebook support groups. To keep our groups support oriented we have had to decline these requests. Now, for a low monthly fee, you can list your business on our site for others to find and support.
You must be a member of MSU, as well as a patient with Myositis or a caregiver.
NOTE: This is not for commercial advertising. If you are interested in commercial advertising, please contact MSU for more information.Sign up for a Member Advertising Plan
We appreciate your interest in advertising with MSU. For more information and pricing, please view our commercial advertising page.Check out Commercial Advertising
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register