Real Stories

Erik Metzler was a young vibrant teenager in the prime of his life when he was diagnosed with ALS – a debilitating and deadly disease that robs a person of all motor control and function.  His mother Gwynne Hickman discovered a drug called IPLEX that had been shown to be effective on severe growth deficiency (dwarfism) in children and had been shown to help some ALS patients.  It held the only hope to improve function and possibly extend Erik’s life.  After months of trying to gain access to the drug through compassionate use or clinical trials, Erik finally succumbed to his disease in 2011.


Ben is a normal teenage boy who, at the age of 11 was diagnosed with osteosarcoma – a childhood form of bone cancer that strikes in the first two decades of life and results in amputation.  This aggressive cancer can and usually does metastasize to the lungs.  MPT is a drug specifically developed for children with osteosarcoma to prevent these metastases.  Unfortunately, this drug has only been approved in Europe and Ben’s parents had to wait a full year to gain access to this drug on a compassionate use basis in order to prevent the return of his disease.  That’s one whole year that Ben was subjected to surgeries and chemo due to the unavailability of the drug in the US.  Today, Ben is an otherwise healthy, active teenage boy who aspires to become a pediatric orthopedic oncologist – thanks to a drug that has not yet gained approval in the US.
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