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

 

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May Update

Peyton and Kayla continue to travel to Oakland every two weeks for their Cyclodextrin injections.  They also are still receiving the 8 hour infusions here in Medford once a week.  All of this travel, and hospital time is exhausting, but we try and spoil them as much as possible to make life a little bit easier on them. (and us).  They are troopers though, and don’t complain.We do feel the treatments are working however, as have seen very slight improvements in Peyton, and more importantly, no neurological decline in either kids.  Also, not making much progress in finding another pharmacy to mix the drug, so that we wouldn’t have to travel to Oakland.  We’ve had several leads, but all turned to dead ends.  It has to be in an ultra-sterile environment, and there are not many pharmacies with the technology to do it (in OR.).  We still have a few leads….so keep the faith.
We want to thank EVERYONE for another huge success for our 3rd annual Vegas in the Valley fundraiser!!  Everyone had a great time, and it looks like we will make over $20K in proceeds again this year!  Thank you especially to our sponsors, and all of the volunteers that made this the best year yet! There is one Sign Up Sheet from the silent Auction that still has room for more guests, if anyone is interested.  Pomodori Restaurant in Medford is hosting a Winemakers Dinner, that pairs a 4 four course gourmet dinner, with wine flights from local wineries.  The date is June 28th, and the cost is $50.00 per person.  They will donate half of that to the Hadley Hope Fund.  They have room for 50, and we’ll be there, if anyone wants to come out for a great dinner and cause!  Just let us know if interested. Bryan and Laurawww.hadleyhope.com



 


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