Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease
 

 

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Fall Update

The last 2 months have been extremely hard, with Peyton's surgery, and other complications.  But, we are working hard to get back to "normal", and we want to thank everyone for their support during this trying time.  Although it has been an extensive recovery, the surgery proved successful and Peyton is able to sleep peacefully through the night, CPAP free!!
 
The kids are back in school now, and enjoying all of their activities filled with choir and football.  Peyton is now in a "transition" school where he is learning life skills, and how to be more independent.  He really enjoys it.
 
The medication that the kids have been taking called Cyclodextrin, is now in a phase 2/3 clinical trial, and if all goes well within the next year, could be approved by the FDA for treatment of NPC disease for ALL patients that suffer with this disease.  Phase I astonishingly proved that treatment with CD reduced the progression of the disease as much as 70%!!!  Something we've known for years before the official clinical trial began, but nothing we could prove with hard data.
 
This of course was the goal of the Hadley Hope Fund for the past 9 years, and to see it so close to a reality in such a short time is nothing short of a miracle. 
 
Our kids have been on this medication for 5 years now, and they, along with other kids, deserve much credit for being "pioneers" and proving that this drug is safe and effective enough to advance to clinical trials.
 
We want to thank all of our supporters for making this happen.  You have helped support research that has led directly to making this a reality, and we are forever grateful for your contributions, prayers, and assistance.
 
Please keep praying that this drug proves effective in treating NPC disease, and will gain FDA approval.



 


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