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Government Shutdown
 
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Shutdown delays review of Hannah's treatment

Updated: Tuesday, October 15 2013, 11:06 AM EDT

REXFORD -- The Sames
family has spent the last five years raising money toward a treatment for
9-year-old Hannah after she was diagnosed with giant axonal neuropathy in March
2008. The treatment developed by researchers was going to be reviewed by the
National Institutes of Health Review Group on October 25 before a clinical
trial, but it will be delayed because of the government shutdown.



“She
asks ‘when is the medicine going to be ready’. ‘Why are you and mom so
frustrated’,” said Matt Sames, Hannah’s father. “[I tell her] ‘we're working as
hard as we can and as fast as we can’ and just hope and pray that things get
done quickly.”



Back when Hannah was first diagnosed there was no treatment or support group, so
the family formed their own called Hannah’s Hope Fund. So far they have raised
$6 million toward a treatment and were preparing for clinical trials later this
year. One of the final steps is the review.



“If they come back with questions it could delay us even further, but we've
done the heavy lifting and that’s the frustrating part is that now that there's
no one to actually process the paperwork and more it along we're stuck,” said
Sames.



Even if the government opens before the October 25 the NIH will face a backlog
delaying clinical trials. Hannah’s GAN is a more rare form that is slated for
phase two of the trials, which will likely begin in the spring.



“We're racing against the clock, so every day it gets harder for
her to get ambulatory,” said Sames. “It’s starting to impact her vocal cords so
it's something that we don't have a lot of time and every day that goes by that
she's not treated is not such a great day.”

Shutdown delays review of Hannah's treatment


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