March 4, 2013 mcfadyena


T4T2010Johnson & Johnson has stepped up!! This would not have happened without your voices. We were loud and clear and J&J finally listened. THANK YOU. THANK YOU. THANK YOU. Here is a statement from Andrew McFadyen of The Isaac Foundation:
Numerous times over the weekend, and again late this afternoon, I had the opportunity to have lengthy discussions with Dr. Amrit Ray, the Chief Medical Officer of Pharmaceuticals at Johnson & Johnson. Those discussions proved very fruitful, and I am pleased to report my sincere belief that Janssen Pharmaceuticals is engaged in moving forward in a very real and serious manner with respect to the proper study of Elmiron as it relates to MPS patients.
Janssen has committed to forming a medical advisory panel, and plans to meet with these experts in the very near future. Their aim will be to review current data so they may better understand whether Elmiron might be a candidate for further research in the search for a safe and effective treatment to support children with MPS. This commitment was made and has been followed through on in very short order. I am happy to report that some of the leading experts in the world who specialize in MPS diseases have already signed on to participate in Johnson & Johnson’s medical advisory panel. In short – this is fantastic news for our kids.
The Isaac Foundation has been communicating with Johnson and Johnson (Janssen Pharmaceuticals) for the better part of 8 months in our ongoing effort to ensure that such a review could become a reality for our children. And while these past 8 months have proved frustrating and stressful, the past few days have restored our true hope that the data presented on Elmiron may lead to a clinical trial in our children in the very near future.
Does this mean that a clinical trial is imminent? The answer is no, we aren’t there yet. But this does mean that a true review of Elmiron by Janssen will be thoroughly conducted by the some of the best minds in the field of MPS, from all over the world. We look forward to monitoring the progress of those discussions as we seek to find the best treatment options possible for all of our kids suffering from MPS.
It is important to note that all of your voices have been heard, and we can’t thank you enough for standing up for what you believe in – for standing up for our children. Two short weeks ago, we were at a dead-end with respect to further study of this drug by Johnson and Johnson. Two short weeks ago, hopes were dashed that progress could be made moving forward. But you let your voices be heard, and asked for Johnson & Johnson to live up to it’s Credo Values – values that commit their “first priority is to the doctors, nurses and patients, to the mothers and fathers…”
Working together, your voices united to remind them of those values. After speaking with Dr. Ray late this evening, it is my firm belief that those values will be upheld and that Johnson & Johnson will do everything in its power to put our children first.
Please take a moment to let Johnson & Johnson know how you feel about these latest developments. You can click on the link below to leave them your thoughts, and comment here too, please!
And to leave a message for some of the advocacy groups that spent countless hours working for our kids, please visit their sites below. They did it all – and always had our kids best interest at heart.

Deb here again. There is a poem that comes to mind on this evening. Here’s to YOU:

The Low Road

What can they do to you? What ever they want.

They can set you up, they can bust you, they can break your fingers, they can burn your brain with electricity, blur you with drugs till you can’t walk, can’t remember, they can take your child, wall up your lover. They can do anything you can’t stop them from doing.

How can you stop them?

Alone, you can fight, you can refuse, you can take what revenge you can, but they roll over you.

But two people fighting back to back can cut through a mob, a snake-dancing file can break a cordon, an army can meet an army.

Two people can keep each other sane, can give support, conviction, love, massage, hope, sex. Three people are a delegation, a committee, a wedge. With four you can play bridge and start an organization. With six you can rent a whole house, eat pie for dinner with no seconds, and hold a fundraising party. A dozen make a demonstration. A hundred fill a hall. A thousand have solidarity and your own newsletter; ten thousand, power and your own paper; a hundred thousand, your own media; ten million, your own country.

It goes on one at a time,

it starts when you care to act,

it starts when you do it again after they say no,

it starts when you say We and you know who you mean,

and each day you mean one more.

-Marge Piercy


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