Quick update

I know a lot of you have reached out about what you can do and how to help, our team is slowly but surely getting through the numerous emails and messages that have came through. As we do this, please share Jason’s message to everyone – send emails, post on Facebook, tweet on Twitter, and send to local newspapers and news stations.

A special message to the MPSII Community, in regards to the response you are receiving from OnePath Shire representatives around Shire’s decision to not provide Jack emergency access to drug, please know the facts. Shire is commenting that they have a history of never denying treatment of approved drugs. After a drug is approved the authority to prescribe and decision of usage of drugs falls upon a physician, not Shire Pharmaceuticals. Similar to the FDA decides if there is enough safety data , not Shire Pharmaceuticals.
Similar to the fact that they do have the power to sponsor and save Jack, versus the statement “we don’t work with families.” See and know the pattern of there answers.

Lastly, as you all know we are actively involved in a remarkable documentary, coming real soon. BWBH
Joey will be visiting us next week to continue filming our journey with rare disease.

Thank you everyone for the outpouring support. Jason and myself are trying to take each day as it comes, a very challenging task when you know your son is dying and there is a drug out there to save him. We get up each day hoping it will be the day Shire will choose to be the hero to the nightmare of this horrific disease.

8 thoughts on “Quick update

  1. Can I help by starting a Change.Org petition to get Shire on board? Seems these corporations only react positively when they are pressured. I would be happy to help.

    • Hello Barry. We did do a petition and when we had our meeting we have them the 32k signatures we had. Didn’t phase them :-/ they are robots, not human beings. I pray for their kids every night.

  2. I am not sure if you’re looking for phase II or III. I found an article that I did a copy & paste of from today’s NY TImes Health guide.

    The U.S. Food and Drug Administration has approved the first treatment for Hunter syndrome. The medicine, called idursulfase (Elaprase), is given through a vein (intravenously). Talk to your doctor for more information.

    Also if you go to Needymeds.com it shows the drug and it being obtained from Shire, but no trial attached to it. You my want to check into this.

    • Thanks Judy. Yes Jack currently recurs weekly Elaprase. Unfortunately it doesn’t get into the brain so his brain is still effected. The new drug is similar to Elaprase except it goes directly into the brain.
      Thank you for researching and reaching out!

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