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

 

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Update Summer '16

Dear Friends-
We are sorry it has been so long since our last update!  We’ve ran into several people wondering how the kids are doing, and we sincerely appreciate the continued prayers and support from so many friends!
 
Well, the short answer is everything has been going “OK” recently.  Peyton turns 19 this week, and is enjoying the summer by reading a lot, going to movies, baseball games, and getting to hang out with friends and family occasionally.  He’s been getting lots of compliments on his new beard as well, although we’ve been trying to get him to shave for the hot summer!  He continues to do well on the Cyclodextrin treatments, and endures a lot of physical therapy and workout sessions.
 
Kayla has gotten to go on a couple trips with the youth group, and a special girls trip for her 16th birthday.  She’s also been swimming, reading, and done some occasional volunteer work.  She also continues to do well with the treatments. 
With Jonah, he’s either working out, reading, or eating!  The kid is getting tall, and will be 14 next month.  We have no more little kids…. L
 
The only negative with both kids is slight hearing loss in the higher spectrum because of the Cyclodextrin.  This is a problematic side effect of the drug that affects maybe half of the patients.  We are currently trying to figure out a solution, but no luck so far.  If anyone knows any Audiologists that would be willing to help, let us know!  The drug is now in phase 2/3 trial, and continues to show promising results.  Hopefully the trial will finish within a year, so they can start the process of getting it FDA approved so ALL NPC kids/patients can receive treatment…..and of course, we are still funding research to find the “next” cure!
 
Speaking of research, Laura has been enjoying working at Sunstone Research for almost a year now.  They conduct clinical trials  for newly developed drugs, so it’s right up her alley.  She has recently been excited to be part of a new trial with a drug for Alzheimer’s disease, which was actually looked at for NPC a few years ago!  We’re hoping the next trial will be for Niemann Pick!
 
We hope everyone is doing well, and enjoying the summer.  If you are like us, it has already gone by so fast!!

Thank you again for all of your continued support, messages, postcards, and prayers!!
 
Blessings,
Bryan & Laura
www.hadleyhope.com



 


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