The Fowler's finally got their face to face meeting with the CEO of Shire, which lasted minutes instead of the hour it was supposed to. CEO Flemming Ornskov said they're declining to sponsor Jack for expanded use and stated, "We don't deal with patients or families". Worst case scenario, the highest risk is death. In Jack's case, that risk is present in his everyday life. The last option the Fowler's have is public pressure, and they're asking for your help by signing and sharing this petition.
Update #1 January 10, 2014
Thank you to everybody for the incredible support for Jack!
Shire has scheduled a meeting with the Fowlers!
DO THE RIGHT THING SHIRE!
Please share this petition again so we can get as many signatures as possible before the meeting!
Let's Help Save Jack!
About this Petition
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!
Let's get 75,000 signatures to help save Jack's life!
Keep up the great work. Look what you've accomplished!
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