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

 

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May Update

Wow.  Summer is almost here already.  Another school year passing as time is flying by….
Peyton is finishing his sophomore year at South Medford High, and enjoys seeing his old friends, and making new ones (especially the staff, that absolutely love his sense of humor!)   Peyton is playing Bocce Ball with the Special Olympics, and having a great time.
Kayla is finishing 7th grade, and looking forward to “outdoor school” the last week of school.  This is “Learning” at the beach….  She just finished Track where she ran the 100 &200 meters, and did the shot put!
Jonah finishes 4th grade, and is currently playing baseball, where his Major Mariners team has only 1 loss so far this year!
 
There was some bad news a couple weeks ago regarding the Clinical Trial at the NIH, where they just started treating NPC patients with Cyclodextrin.  They had to put the trial “on hold” for now, as they are going to have to change the way the drug is delivered.  Fortunately, this does not affect Peyton and Kayla’s treatments at all, but it is sad that more NPC children are going to have to wait longer now before they can start the treatments.  We pray it won’t be long, and we’ll do anything we can to help speed up the process.  Peyton and Kayla continue to do very well with their treatments, and are very much enjoying the freedom of the home infusions!
 
And finally, only a little more than 2 weeks before our next fundraiser, Hadley Hope’s Vegas in the Valley!!!  So, please, go online now and purchase your tickets, and help us make this 4th annual event the best yet!
Tickets can be purchased at:  https://hadleyhope.com/BuyProducts.asp?EventID=7
 
Blessings,
Bryan & Laura
www.hadleyhope.com



 


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