10 April, 2014 mcfadyena

Update – Jack Fowler

photo-3Hello Everyone,

As many of you have noted, we’ve been quiet of late on news of Jack Fowler.  While we haven’t stopped working on behalf of Jack – work that has been relentless, stressful, and heartbreaking, we went quiet publicly while we worked some back-channel routes to see if Shire would and could be forthcoming and interested in saving this little boys life.

Unfortunately, Shire has continued to rebuff our efforts and continues to put Jack’s life in jeopardy.  Jack faces a steep decline, and his parents are beside themselves with heartache and heartbreak.  It seems unbelievable to me that a drug exists that has the potential to save him, yet it’s being withheld due to reasons that the pharmaceutical company cannot really stand behind.

We will be redoubling our efforts of the coming days and weeks.  Please stay tuned on how you can help #SaveJack.

In the meantime, drop over and read this article.  It’s something that Shire should read as well.  It’s all well and good for the FDA to have a plan.  But if big-pharma doesn’t want anything to do with it, our kids will continue to die needlessly.

I’ll be in touch with you all soon.

With Love,


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