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Rhabdomyosarcoma is a terrifying childhood cancer.  It is considered an orphan disease because only 250 cases are diagnosed each year in the U.S. – and a large percentage are infants and young children.  Because the numbers are small, research to find a cure is put on the back burner. But Rhabdo is a cruel and often lethal type of cancer.

It is usually discovered by accident. Imagine, giving your youngster a bath and finding a small lump on his limb, neck, or in the abdominal area. Thinking it is an insect bite you leave it alone. But it doesn’t go away and in as little as a few days it has doubled or even tripled in size. This may be Rhabdo – it grows that quickly!

So instead of going to a scheduled birthday party, your child, your grandchild, your niece or the child of a close friend is rushed to a hospital only to be given the diagnosis of cancer. Not an ‘ordinary’ cancer, but Rhabdomyosarcoma.  It is mind boggling and mind numbing. The standard course of treatment consists of 54 weeks of chemotherapy (yes 54 weeks!), radiation and possibly multiple surgeries – or even an amputation – trying to gain ‘clear margins’.

It grieves us to know that  in the past 40 years there have been no major breakthroughs in finding a cure. In fact, during the last 20 years only one drug was approved for childhood cancers, while this year alone, there have been over 20 new drugs approved for adults. So we cry, live in fear and read every article and research paper available, hoping… just hoping that a breakthrough is around the corner.

This group is Focused On Rhabdo – not other cancers – but this one terrifying disease.  Together, with a defined focus on research we plan to move towards a cure faster than the medical or research communities can alone. Together, because there is power in a dedicated group.