TMA’s 2019 Annual Patient Conference will be better than ever. Join us in Minneapolis, MN on September 5-8 at the DoubleTree by Hilton—Bloomington. The theme is Who YOU Are Matters, recognizing the individual experience of myositis diseases for both patients and care partners. More sessions for care partners and on exercise. New sessions on mental health, ILD, and pain management. Special discussion sessions for women, men, younger patients, and care partners. See video of our Sneak Peek Preview webinar.

Invite your doctors to attend TMA’S Annual Patient Conference. Physicians can learn the latest clinical approaches to treating myositis patients from the international myositis experts on TMA’s Medical Advisory Board. They can also network with these global myositis experts and learn about enhanced therapies that may result in better patient outcomes.

Tell your doctors about TMA’s Myositis Symposium taking place during TMA’s Annual Patient Conference on Friday, September 6 at 10:30am-3:30pm. This is a chance for health care professionals with an interest in myositis to hear TMA’s Medical Advisory Board of international myositis experts discussing their latest research and the evolving understanding of myositis diseases. Registration is required.

Resources

During Myositis Awareness Month, TMA initiated an outreach campaign to bring awareness to the ways myositis diseases disproportionately affect women of color. See our fact sheet here.

See the webinar Women of Color and Myositis presented by Dr. Sonye Danoff and Dr. Cheilonda Johnson.

May isn’t the only time for myositis awareness. Keep the momentum going with resources that can be used all year ‘round.

TMA in the news

TMA was in the new during May, Myositis Awareness Month. Here are just a few of the media items spreading awareness of myositis diseases and TMA’s Women of Color and Myositis campaign.

TMA member Miyoshi Gordon-Matthews’s article Living with myositis, a mystery to many appeared in the Orlando Sentinel, The Florida Sun, and the Orlando Times during Myositis Awareness Month.

TMA executive director Mary McGowan, TMA member and patient advisor Darlene Shelton, and pulmonologist Dr. Cheilonda Johnson were interviewed for this informative article in the Indianapolis Recorder Newspaper. It highlights the disparity of risk for women of color and myositis diseases.

Myositis with Dr. Cheilonda Johnson is a podcast on Outbreak News featuring a TMA myositis expert discussing why women of color are at greater risk for certain myositis diseases.

News

TMA is grateful to Kezar Life Sciences for supporting Myositis Awareness Month. The San Francisco-based company, which is developing a new treatment for myositis, helped to raise more than $14,000 for TMA programs by providing matching funds during the May 11 San Francisco Giants baseball game.

TMA also says thanks to Corbus Pharmaceuticals for supporting our successful Regional Patient Conference at the University of Kansas in April. Corbus’s phase 3 clinical trial is testing lenabasum for treatment of dermatomyositis.

Orphazyme announced in April that it’s phase 2/3 study of arimoclomol in sporadic inclusion body myositis is now fully enrolled thanks to TMA members who so eagerly supported this clinical trial. Results are expected by early 2021.

Clinical trials

Corbus Pharmaceuticals is recruiting adults with dermatomyositis for their phase 3 clinical trial testing safety and effectiveness of lenabasum. Multiple study sites are available across the US. New sites are expected to be added soon.

Patients with active interstitial lung disease and antisynthetase antibody, whether or not they have active myositis symptoms, are needed to test the effect of adding the drug abatacept to standard-of-care immunosuppressive therapy.

Bristol-Myers Squibb is recruiting adults with active dermatomyositis or polymyositis for a clinical trial to evaluate the effectiveness and safety of abatacept in combination with standard medicines in improving symptoms of active myositis. Multiple study sites are available throughout the US and abroad.

Pfizer is currently seeking adults for a dermatomyositis clinical trial to assess the effectiveness and safety of an investigational drug compared to placebo. The study drug is a biologic given by infusion. The clinical trial is actively recruiting patients at multiple sites in the US. Learn more here.

The National Institute of Environmental Health Sciences is conducting a number of studies to better understand myositis diseases, including Adult and Juvenile Myositis, Myositis in Military Personnel, Environmental Risk Factors for the Anti-Synthetase Syndrome, and Rheumatic Disorders in Siblings.