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    Posted January 21, 2014 by
    This iReport is part of an assignment:
    Living with a rare disease?

    My daughter Carley has Ewing Sarcoma

    Carley was diagnosed at 16 with a rare bone cancer called Ewing Sarcoma(which was recently featured on an episode of Bones). After being thrown into the world of rare cancer with a teen//young adult, we learned that there has been NO CHANGE in cure rates in over 30 years for the 72,000 young adults diagnosed with cancer every year! Why? Not enough focus, research, clinical trials to raise the cure rates. Cure rates in both older adults and pediatrics have risen significantly. Now is the time for focus and attention on this critical age group(15-39)
    They are in the prime of their life and have so much to offer but their lives are being wasted. Instead of spending money for research in sarcomas and brain tumors, we are spending money for research on Viagra and plastic surgery.

    Nature Journal did a fantastic video on Carley's story and the life saving immune vaccine therapy she was the first to do as a Ewing patient after relapsing a year after her initial treatment. To view go to: http://www.nature.com/nature/videoarchive/cancer-immunotherapy/index.html

    Carley also made her own video for our foundation's annual Going for Gold Luncheon. It has been uploaded into your media file.
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