ReveraGen

FED and CDRMP provided critical funding to discover and rapidly develop vamorolone (VBP15) – a drug currently in clinical trials in DMD boys.

Spearheaded by FED, vamorolone has been developed under an innovative venture philanthropy model, with extensive early de-risking of the program, with sharing of risk and sharing of potential benefit with over a dozen foundations and governments worldwide. In effect, the business model has a fiduciary duty to stake holders, not stock holders.

Vamorolone hopes to make corticosteroid treatment of DMD boys obsolete. While steroids increase the strength of DMD boys, and are standard of care, the side effect burdens are extensive and detract from quality of life. Vamorolone hopes to retain or improve upon the benefit of steroids, while removing most or all the side effects.

FED is a co-founder of ReveraGen, and continues to play a major role in this venture philanthropy model and vision. FED is encouraging the innovations in clinical trial design and conduct initiated and carried out by ReveraGen, laying the groundwork for an improved quality of life of DMD boys.

See publication on vamorolone here……

Leadership

Board of Directors

Joel Wood, President | Scott Sinder, Secretary | James Wood, Treasurer | Dan Carson, Director | Dave Heil, Director | Brad Todd, Director

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.