Roche Backs Out on Seaside Therapeutics Drug Trial for Fragile X. Parents Dismayed

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Most pharmaceuticals represent years of research, millions of dollars of investment, and the tacit promise made by the government that what is in the bottle is safe and effective. Most pharmaceuticals also represent the personal stories of patients and their families; stories that are often filled with suffering, struggle, but most importantly hope. Of course, we understand the responsibility of the FDA to protect the public. Of course, we understand that pharmaceutical companies are responsible to shareholders and have a complex formula to determine how they allocate resources. But sometimes, amidst shareholder meetings, bottom lines and risk aversion, our personal stories are lost. Sometimes, we have to remind those who control access to promising treatments that there are lives at stakeā€¦ that balanced against their ledger is our precious, fragile hope.

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