Jack is clearly battling a life-threatening condition. He clearly needs access to the treatment that Shire has developed as his health and cognitive abilities are rapidly deteriorating. And he needs it now, or he faces certain death. The case for expanded access has never been more clear.
We made it known to Shire that we have a location where Jack can receive his treatment. Funding has been made available to ensure all baseline studies are completed and to ensure on-going evaluations and safety monitoring are put in place. We have a physician who has agreed to treat Jack, and we are confident that any Independent Review Board will approve that treatment. FDA guidelines allow for expanded access for such a therapy. Once again, we know it’s safe, and we know it works. The only roadblock to providing Jack with his fair chance at life is Shire. To many, this is inhumane and unacceptable. Please help to save Jack!
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