Cooperative International Neuromuscular Research Group

(CINRG – pronounced ‘synergy’)

CINRG is an international academic network of expert neuromuscular clinics that was formed to build expertise and infrastructure for clinical trials in Duchenne muscular dystrophy and other neuromuscular disorders.

Through financial support from FED, and extensive funding from the Department of Defense CDMRP program, CINRG has had a profound impact on understanding the natural history of DMD and enabling clinical trials.

CINRG has developed the most sensitive and reliable means of measuring improvements in strength and ability in DMD boys, including the innovative CQMS muscle strength testing system (CINRG Quantitative Muscle System), timed function tests, and centralized data management.

CINRG has also defined biomarkers for monitoring of patients through a small drop of blood, and defined genetic modifiers causing variability between patients.

See CINRG publications here……

Leadership

Board of Directors

Advisors

Dr. Eric Hoffman Dana Wood Monica Heil Tina Carson

Staff

Michelle Payne, Executive Director

Financial & Tax Information

FED strives to be transparent in our work. Here are links to our most recent IRS form 990 and audited financial statements. If you have questions, please do not hesitate to contact us.

What is Duchenne Muscular Dystrophy?

The words “incurable” and “untreatable” have been closely associated with Duchenne. It is an X-chromosome disease that afflicts boys, and it will never be eliminated through genetic screening because the dystrophin gene is the largest gene in body – times ten – and thus much more prone to have flaws that are not inherited. The trajectory of this disorder is insidious. Duchenne boys typically are not diagnosed until they are four years old or older. They tend to get better in the so-called “honeymoon” stage, which usually lasts until the early teenage years. But their muscles are deteriorating and cannot regenerate. Dystrophin is part of the chemical glue that holds muscle cell walls together, and those walls eventually collapse and are filled with collagen that causes fibrosis. First the legs give out, slowly, then, the arms and upper body. The disease moves from skeletal muscle to smooth muscle tissue. Lungs and hearts deteriorate. Corticosteroid treatment forestalls the muscle deterioration, but steroids have terrible side effects such as making bones brittle. Unlike many single-gene-defect disorders that only strike at certain ethnicities or demographics, Duchenne is a disease that does not discriminate – it is the world’s leading lethal inherited disease, afflicting one in 3,500 boys. The incidence rate among all races is identical. As the world becomes more conscious of issues of racial disparity, it is clear that standards of care are resulting in disparate quality of life and certainly life expectancy among sufferers of different races. You get the picture. Duchenne Muscular Dystrophy is excruciating, ruthless, sadistic, and painful. More than anything, it is cruel. The FED’s mission is to identify, leverage, and bring to market treatments that will benefit ALL sufferers of this disease.