Newswise — In California, videographer Mike Peck wears gloves, even in his mild climate, to insulate his always-cold fingers. In Delaware, Anupa Smit struggles to keep up an arduous workout regimen to counter the intermittent spells of muscle weakness she knows to expect. In Florida, Ray Lesoine has used a lift to get in and out of his wheelchair ever since his own muscles became too weak to bear his weight.

Mike, Anupa, and Ray have myositis, a disease with many mysteries, few treatments, and no cure. Fortunately, they do have dedicated scientists searching for answers that will improve their lives and the lives of thousands of others like them.

Those scientists are likely to experience a boost in funding support in the coming years thanks to new legislation passed this week by the Senate, and expected to be signed by President Barack Obama. The 21st Century Cures Act includes $4.8 billion to fund, in part, the President’s “Precision Medicine Initiative.” This initiative aims to transform the way we treat disease, especially rare diseases like myositis.

This year, TMA offered half a million dollars in new funding for research into causes, treatments, and cures for myositis diseases. This research is the result of TMA’s ongoing effort to understand this disease, which is challenging to diagnose and difficult or impossible to treat. Since 2002, the nonprofit has provided nearly $6 million in funding for projects designed to develop better treatments, possible prevention, more effective rehabilitation, and ultimately a cure.

Myositis experts from Johns Hopkins University, the Mayo Clinic, the NIH and other prestigious American institutions as well as from the Netherlands, Great Britain, France, and elsewhere serve as TMA medical advisors. During this research cycle, these experts selected, from a pool of 21 applications spanning all areas of the disease, three promising projects to fund.

Among these projects is a grant awarded to Iago Pinal-Fernandez, MD, PhD to support his post-doctoral fellowship training at the National Institutes of Health. Under the direction of TMA medical advisor Andrew Mammen, MD, PhD, Pinal-Fernandez proposes to analyze specific substances that produce inflammation in muscle cells. Through this work, he expects to identify unique targets for new therapies.

Another grant has been awarded to Janine Lamb, MD, PhD, a myositis researcher at the University of Manchester in Oxford, England. Because myositis is thought to be associated with environmental triggers, such as infection, Lamb is looking for evidence of past or current microbial infections in the blood of patients with one form of the disease, inclusion body myositis (IBM). Using a screening technique previously used in cancer research, Lamb expects to define the underlying cause of IBM, which will aid development of screening and diagnostic tools, as well as effective treatments for this form of myositis that currently has no treatment.

TMA medical advisor Thomas Lloyd, MD, PhD is the recipient of this year’s third TMA research award. A researcher, clinician, and faculty member at the John’s Hopkins Myositis Center, Lloyd has been working for some time to develop a model for IBM. Research into the cause of this progressive, degenerative disease has been hampered by the fact that no model exists to develop and test new therapies. With the help of TMA research funding, Lloyd hopes to overcome this constraint, allowing progress to be made toward developing a cure for this and other myositis diseases.

Myositis is a rare autoimmune disease of the muscles that takes many forms, including dermatomyositis, polymyositis, and inclusion-body myositis. Patients face a number of other life-threatening disorders as well, including interstitial lung disease, antisynthetase syndrome, and a higher risk of cancer and other diseases.

On average it takes more than three-and-a-half years and five doctors to correctly diagnose an autoimmune disease. For patients experiencing the debilitating muscle weakness and pain of myositis, this delay can mean the difference—literally—between life and death. Discovering the underlying causes of symptoms, developing effective treatments, and ultimately finding a cure for this inflammatory myopathy is part of the mission of The Myositis Association.

Journalists are invited to seek additional information about myositis at myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts, or TMA’s executive director, call 434-882-2189 or email [email protected].