Archive for March, 2009

This is a follow up on the post earlier about Cyclodextrin.  Addi & Cassi are twin girls that live in Reno, NV and their parents Chris & Hugh Hempel are great people doing a lot of great things with the abilities they have been given.

The research is early and the talented people working on this don’t exactly know how it is working or how it might ultimately turn out in children with NPC but it is a good risk to take from their perspective.

The girls will have mediports installed so they can inject Cyclodextrin right into their bloodstreams.  Of course they will be heavily monitored for any progress or digression.  This is great news.  Our prayers and wishes are with them.

Here is the blog post on Addi & Cassi website:



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This is an awesome news story that CBS was so kindly to do and air!  Brisan, Parker, and all of us had a chance to meet the Papier family on 1-8-09 during our stay at the National Institute of Health in Bethesda, MD for the Natural History study that is on going.

It was a honor to have met them and to see another family with a boy that is suffering from this same fatal disease.  The Papier family has known about Dillion’s diagnosis for about 3-4 years and have done extensive events to raise money for NP-C.  They have raised over 100k and have taken a firm stance on doing something positive not only for Dillion but for other beautiful children having thier childhoods taken away from them!

Here is the video:


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