13 February, 2014 mcfadyena

Jack Fowler – Update

image-27Hi Everyone,

I thought I would take a moment to update you on our latest attempt, our latest plea, to Shire Pharmaceuticals to open communication and connect with us about Jack Fowler, Expanded Access, and doing what is right for the Hunter Community as a whole.

Yesterday evening, I sent Shire CEO Flemming Ornskov and Head of R and D Phil Vickers an invitation to participate in a teleconference with Jack’s physician (and Internationally renowned MPS expert) Dr. Barbara Burton, and with Dr. Emil Kakkis, an expert in rare diseases who has a wealth of experience in the pharmaceutical world and with expanded access requests to save children’s lives.  The purpose of the call was to ensure that all parties are on the same page moving forward, with the hope that a collaborative discussion can take place to best meet the needs of everyone involved.

I have not had a response from Shire, though I remain hopeful that they will agree to participate.  At some point, someone at that company needs to look at this situation with a different lens.  At some point, someone at Shire will have to look back at their company credo and work to “Be As Brave As The People” they treat.  I’m hoping that some point is soon.

I’ll keep you updated as things progress.  In the meantime, I’ve been busy speaking with numerous media outlets and scheduling in radio appearances.  I can confirm that Jamie and Jason Fowler, Jack’s parents, and The Isaac Foundation will appear on a Boston Call-In Show in late February, from 9 – 10 pm.  This show is carried over 38 states, so chances are we’ll be on the radio somewhere close to you.

We know that our case to #SaveJack is solid.  We have everything in place to save this little boy’s life.  We only need Shire to sponsor our effort, something we all know they should do.

With Thanks,


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