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


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5 Year Reflection

Miracles do happen.
5 Years ago, 2 of our kids were diagnosed with a rare, degenerative, terminal disease.  We were told there is no cure, or therapies available, and to go home and hug our kids, and wait for the inevitable.
3 ˝ Years ago the word Cyclodextrin was first spoken in Niemann Pick Disease research.
2 Years ago our kids start receiving infusions of the compound Cyclodextrin.
1 Year ago, our kids also start receiving injections into the CNS with Cyclodextrin.
Today, all of our kids’ Physicians see no progress in the disease within the last 2 years.
Today, there are over a dozen kids in 4 countries receiving Cyclodextrin treatments.
Today, the NIH is starting a clinical trial with Cyclodextrin, so that 9 more kids will start treatments.
Next year, if all goes well, the NIH will begin Phase II of the trial, so that many more NPC patients can begin treatments, world-wide.
We realize it is far too early to claim victory over this devastating disease, and Cyclodextrin may or may not be a “cure”.  But, to have a new therapy available in such a short time, that can help slow the progress of the disease, is nothing less than a miracle.
Please keep the prayers/thoughts/wishes/good vibes coming.  We Know they are working……
Bryan & Laura


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