The Myositis Association (TMA) recognizes that the best hope for a cure for myositis diseases lies in research. Since 2002, TMA’s annual research grants program has approved 68 projects totaling nearly $8.2 million to study the underlying causes and natural progression of myositis, develop better treatments and more effective therapies, and ultimately to create a cure for this collection of rare, disabling conditions.
TMA funds projects across the spectrum of myositis diseases for researchers around the globe. We are pleased to announce that in 2024 three of these research projects, totaling nearly half a million dollars, were completed.
- A pilot grant of $200,000 to Cheilonda Johnson, MD, MHS, Assistant Professor of Medicine (Pulmonary, Allergy and Critical Care) at the University of Pennsylvania School of Medicine, Philadelphia, PA.Dr. Johnson’s project identified specific genes associated with interstitial lung disease (ILD) that occur in those with myositis and created a database of lung tissue samples from patients with different forms of the disease. This project showed that having myositis genes not only predicts if a person is at risk for developing ILD, but also the type of myositis genes predicts which patients are at higher risk for severe disease.
- A clinical research fellowship grant of $100,000 to Alexander Oldroyd, MD, Academic Clinical Lecturer at the University of Manchester, Manchester, England, UK. Dr. Oldroyd helped to develop a smart phone application to remotely monitor continuous activity levels of patients with myositis with the ability to detect disease symptom-based flares. Not only can this provide a more accurate measure of disease activity, but it can be a more accurate measure of treatment effectiveness that can be valuable for clinical trials.
- A research fellowship grant of $100,000 to Chiseko Ikenaga, MD, PhD, Assistant Professor of Neurology at Kitasato University, Tokyo, Japan. During the fellowship, Dr. Ikenaga worked with neurologist Dr. Thomas Lloyd at the Myositis Center at Johns Hopkins University School of Medicine, Baltimore, MD. Dr. Ikenaga demonstrated that there is a genomic pathway related to stress that may cause critical muscle damage in patients with inclusion body myositis (IBM). This pathway is associated with atrophy of muscle fibers and inflammation and can be a potential target for drug therapy.
“These projects advance our understanding of different forms of myositis, bringing much-needed hope to those of us who live with these rare, debilitating conditions for which there are few, if any, effective treatment options,” says Martha Arnold, former member of TMA’s Board of Directors, who lives with inclusion body myositis.
TMA’s Research Grants Program is funded entirely by individuals who live with or love someone with myositis. If you’d like to be part of the search for understanding, effective treatments, and a cure for myositis diseases, please consider making a donation.
I’m excited to read about the study that Dr Ikenaga did regarding stress affecting muscle fibers in IBM, as I myself have noticed a significant decline in my strength and functional mobility when I am going through, or have gone through, a stressful time. I have sIBM and have thought that there surely has to be a connection. I have even googled what enzymes are released during stress to see if I could find a self-remedy. I am excited that this is being looked into and sincerely hope that Dr Ikenaga’s findings will lead to investigation of medications that might be effective in treatment.
Please tell me more, if possible, about Dr Ikenaga’s research on IBM. How may I learn about the drug that has been tested and other relevant details of his research, such as the genomic pathway related to stress in patients with IBM, such as myself.
Thank you.
Bonnie, Sirolimus (aka Rapamycin) is being tested for IBM in clinical trials now. https://clinicaltrials.gov/study/NCT04789070?cond=Inclusion%20Body%20Myositis&term=Rapamycin&rank=2 We should know some results by the end of next year.
Bonnie, the stress Dr. Ikenaga talks about is not the same thing as when we are stressed by life. Genomic stress is more like conditions that can affect the DNA of a person’s cells. This stress can be caused by things inside the body like replication errors, and things outside the body like radiation and chemical exposure. When cells experience genomic stress, it can lead to DNA damage, mutations, and other DNA changes that can affect how the cell functions and can contribute to disease. I know it’s confusing. Hope this helps.