Posts tagged with intrathecal

Flexibility + Medical Trauma + Miracles = Clinical Trial

Posted Wednesday April 02, 2014 by Melissa

Not all clinical trials are the same – some involve just a...

Not all clinical trials are the same – some involve just a single blood draw, or interview, or procedure. But others, like the MPS II intrathecal trial, are very demanding,...

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#SaveJack, #BeBrave

Posted Friday January 17, 2014 by Melissa

I’ll never feel okay about kids dying. Never. And I’ll surely never...

I’ll never feel okay about kids dying. Never. And I’ll surely never feel okay about my best friend’s son dying. But in the whole convoluted process that is drug discovery,...

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For Jack

Posted Sunday December 01, 2013 by Melissa

There aren’t really words to describe what Jack means to me. Besides...

There aren’t really words to describe what Jack means to me. Besides Case, Jack was the first boy with Hunter Syndrome that I met. His mom, my friend Jamie, welcomed...

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AIM-IT: Phase III trial for Idursulfase IT

Posted Friday October 25, 2013 by Melissa

I’m sitting at the National MPS Society conference and learning more about...

I’m sitting at the National MPS Society conference and learning more about the next step in the testing of Idursulfase IT – the Phase III trial. I know families are...

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The Phase III

Posted Monday July 01, 2013 by Melissa

Our community has been waiting with anticipation for the next phase of...

Our community has been waiting with anticipation for the next phase of this intrathecal trial to begin, that is, the Phase III clinical trial. Last week, I became aware of...

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Intrathecal Trial Update – “Jeep for me!”

Posted Thursday June 13, 2013 by Melissa

Case hit another milestone by claiming Jeeps...

Case hit another milestone by claiming Jeeps...

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Intrathecal Trial Update – New port (hopefully)

Posted Wednesday June 27, 2012 by Melissa

So we recently learned about the new port-a-cath that is contemplated to...

So we recently learned about the new port-a-cath that is contemplated to be used in the next phases of the intrathecal clinical trial. If you’ve followed along, you’ll know that...

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Soph-a-port mini

Intrathecal Trial Update – Highs and Lows

Posted Saturday June 09, 2012 by Melissa

I’ve often said that a clinical trial is not for the faint...

I’ve often said that a clinical trial is not for the faint of heart and this past month should testify to that. We were at UNC from May 14-25. We...

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Bunny suit

As we watch the bridge…

Posted Monday February 13, 2012 by Melissa

Clinical trials are not for the faint of heart. I think I...

Clinical trials are not for the faint of heart. I think I may have said that before, but I think generally because I am an upbeat and optimistic person, people...

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Old wooden bridge

And his name was Flower…

Posted Thursday February 09, 2012 by Melissa

Santa brought Case a pink-nosed Zhu Zhu pet for Christmas. Case runs...

Santa brought Case a pink-nosed Zhu Zhu pet for Christmas. Case runs like lightening, pretending that the hamster is after him when he activates it and the crazy thing starts...

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Brain maze

Intrathecal Trial Update – Of Ports and Prayers

Posted Wednesday February 01, 2012 by Melissa

We are in North Carolina on the tail end of our visit...

We are in North Carolina on the tail end of our visit for IT dose #15. The dose was successful, meaning they were able to access the port, draw off...

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Intrathecal tattoo

Anatomy of an Intrathecal Clinical Trial Visit

Posted Friday October 28, 2011 by Melissa

Now that we only have 4-day visits instead of 9-day visits, things...

Now that we only have 4-day visits instead of 9-day visits, things seem to go much more quickly. There’s definitely time for some fun stuff (less now that the trips...

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Milestones

Posted Wednesday July 20, 2011 by Melissa

Milestones are things we hear about before our babies are ever born....

Milestones are things we hear about before our babies are ever born. There are pregnancy milestones that then become first year milestones, and second, and on and on. For many...

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IT dose 8