We are empowering the myositis community through education, patient advocacy, awareness, clinical trial matching, access to research, and need-based financial assistance for patients.
We are helping lead the effort to find effective, affordable, and safe therapies for all forms of the idiopathic inflammatory myopathies, myositis. And, while research is extremely important, at MSU we know managing day-to-day life with myositis is difficult and is the reason we provide patient-centered programs.
Collaborating with like-minded organizations, and continuing to build relationships with researchers, other nonprofit and patient advocacy organizations, and the pharmaceutical industry, in a transparent and straightforward approach will continue to be a top priority. Together we can do great things for the myositis community.
We wanted to share a little bit of news. We aren’t able to give many specifics yet, because it’s still in the conceptual stage, but thanks to our pilot survey with close to 500 responses, MSU is teaming up with several known myositis researchers to conduct a more formal study about myositis pain and the effects of the 2016 CDC regulations on opioids. We will let you know more as it becomes available, but for now, we want to thank YOU!
If you didn’t get to take the initial survey, don’t worry. You will have the opportunity to have your voice heard on this topic soon. Be sure to register for your free MSU membership at UnderstandingMyositis.org/register to stay updated via email and to continue getting involved to make a difference.
We couldn’t do anything we do without your participation, support, attention, and of course, your donations and sharing our fundraising efforts! You are the reason why our nonprofit organization was founded; by patients for patients. You matter!
- June 22 @ 2:00 pm - 3:30 pm EDT
- June 28 @ 4:00 pm - 6:00 pm EDT
- July 9 @ 7:00 pm - 8:30 pm EDT
- July 20 @ 2:00 pm - 3:30 pm EDT
- July 26 @ 4:00 pm - 6:00 pm EDT
Education and Support are key
We have hosted several myositis experts to lead live, online video sessions. All sessions were hosted online with live participation. These sessions were recorded and we hope you will take advantage of the educational opportunities these provide for you and your family members.
Find the videos on our YouTube page and share with your loved ones.
If you are living with one of the idiopathic inflammatory myopathies (myositis) or you are a care partner, family member, or friend of someone who is, we invite you to join the Myositis Support Community to connect, collaborate, share stories and discuss questions and concerns, as well as to feel empowered.
Living with a rare muscle disease is hard enough. Why not get support?