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

 

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Nov. Update

This Thanksgiving season, the Hadley Family has a lot to be thankful for:
 
We would like to sincerely thank everyone that came out to support our 5th annual Harvest of Hope Dinner!  The night was very special, with great food, wonderful entertainment, and terrific supporters!  The warmth and support of everyone in the room was truly overwhelming, and we cannot thank you enough.  It was a huge success.  We tried to keep the evening light, and had some great news to share with everyone.  Hereís some highlights:
 
  • Chris Corcoran of the Medford City Council issued a proclamation, announcing October as Niemann Pick Disease Awareness Month!  We are thankful to the mayor and city council for helping raise awareness of this disease.
  • Itís been 2 years since starting the Cyclodextrin treatments via IV infusion, and almost 1 year since the injections, and the kids are doing great!  The physicians continue to see very little, if any, decline in Peyton, and Kayla is still not showing any outward signs of NPC disease!
  • We are applying to the FDA to amend our treatment protocol, and allow for the kids to start to be able to do their weekly 8 hour infusions at home!  This would obviously put a lot less stress on the family, especially the kids!
  • AndÖ.No more trips to Oakland!!  Yes, we were able to find a pharmacy locally that could make the drug for us, so we had our first injection last week here in MEDFORD!  Weíll miss Oakland (OK, not really), but we are very happy to not have to drive there every two weeks for treatments.  It was wearing on everyone, so we are thrilled at this news!
 
To see the latest video update on our family and treatments, please click on the top video on our website:  http://www.hadleyhope.com/index.asp
 
Again, thank you to everyone that continues to support our kids, and all NPC patients, over the last 5 years.  Itís been an incredible journey, and we still have a long ways to go, but there IS HOPE!
 
Blessings,
Bryan & Laura
www.hadleyhope.com



 


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