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

 

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December Update

The Hadley Hope Fund Board of Directors, and the Hadley Family wish to thank all of our supporters who attended the 4th annual Harvest of Hope dinner.  With your generous support and presence, we are $16,000 closer to funding a Clinical Research RN to support children and their families seeking optional treatments for “Childhood Alzheimer’s.”  Thank you so much for your kindness and generosity.  If you were unable to attend and would like to donate please visit: Donation.asp

As we mentioned at the dinner, we have been approved to start injections of cyclodextrin into the CNS (so it hopefully goes to the brain!), but will have to be going to Oakland for the treatments, since the pharmacy here could not make the solution.  It has been a long and frustrating process, but we are hopeful that we can begin the injections within the next 2-3 weeks.

Our Christmas wish is that ALL of the families and children with Niemann Pick Type C will have the opportunity to start Cyclodextrin treatments in 2011.  This is why we are shifting our funding towards CLINICAL research and support, in the efforts to start kids on cyclo sooner.

As 2011 comes to an end, we reflect on the blessings that we have.  First, we have our family, and are enjoying every day; talking, laughing, and playing.  We are also very fortunate to now have treatments available that could be helping stop the progress of NPC.  Mostly, we are sincerely thankful for all of the continued support from all of our family and friends.

Have a VERY Merry Christmas.

Bryan & Laura

www.hadleyhope.com





 


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