TMA’s 2019 Annual Patient Conference takes place on September 5-8 at the DoubleTree by Hilton Bloomington in Minneapolis, MN. This year’s theme is Who YOU Are Matters, recognizing the individual experience of myositis diseases. Sessions include presentations by TMA’s Medical Advisory Board of international myositis experts and others. Early registration, with a lower fee, is now open through May 31.
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.
May is Myositis Awareness Month. This is the time for TMA members to go out and tell their story to the world. This year, TMA will initiate a campaign aimed at raising awareness about the fact that most myositis diseases disproportionately affect women of color. To help you develop your own awareness campaign, TMA has a resource guide with ideas for events and how to use social media to get your story out. TMA can provide flyers, brochures, and other materials to distribute, please email TMA@myositis.org.
TMA members in the news. When Peter Frampton announced that he’s been diagnosed with IBM, TMA and our members took this as an opportunity to raise awareness of myositis, reinforcing the message not to dismiss symptoms as signs of old age. TMA Board of Directors Chair John McClun’s op/ed article that was featured in a number of local publications in central Florida. TMA member Susan McLoughlin wrote a letter to the editor in the Kansas City Star. And TMA Executive Director Mary McGowan was quoted in an article in the online publication Helio Rheumatology.
The IBM Registry’s (IBMR) Personalized Index Calculator is an ongoing study at Yale University that aims to learn how IBM affects different people over time. To achieve this, Calculator users are encouraged to update their responses to the IBM Functional Rating Scale questions every three months in order to paint a more complete picture of the gradual effects of IBM for themselves and for the research community. To learn more or to sign up, please visit the IBMR Calculator page.
Researchers at Yale University are recruiting IBM patients age 46 or older for a pilot study to measure electrical impedance myography (EIM) parameters and clinical outcome measures of individuals with IBM to gather insights into the potential application of this technology as a disease biomarker. Contact: Joan Nye (203) 737-7095.
Ongoing clinical trails
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.
Patients with dermatomyositis with skin symptoms that do not respond to treatment are needed for a clinical trial testing the effectiveness of H.P. Acthar gel. The trial is being conducted by researchers at the Cleveland Clinic. To enroll or for more details, contact Lisa Rittwage at 216-444-4659.
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.
Medical literature you can use
Exercise in Myositis
“All studies report safety of exercise in all types and stages of myositis and exercise could now be considered as medicine.” (Review)
Increasing incidence of adult idiopathic inflammatory myopathies in the City of Salford, UK: a 10-year epidemiological study
“The incidence of adult IIM in Salford, UK is…higher in females and is increasing over time.”
Dr. Lisa Christopher-Stine: Polymyositis? It’s more likely something else
“True polymyositis is rare, so it’s important to carefully consider other likely diagnoses.”
Proprotein convertase subtilisin/kexin type 9 antibody and statin-associated autoimmune myopathy
“Treatment [of statin-associated necrotizing myopathy] with…PCSK9 monoclonal antibodies is a relatively new way to decrease cholesterol levels and cardiovascular morbidity and mortality in high-risk patients.” (Abstract)
Inclusion body myositis: Clinical features and pathogenesis
“Mounting evidence that IBM is an autoimmune T cell-mediated disease provides hope that future therapies directed towards depleting these cells could be effective.” (Review)