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The Hempel Family

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Hugh

Addi and Cassi's father, Hugh, is an Internet pioneer who sold one of the first banner ads on the World Wide Web. Hugh has spearheaded the search for an NPC treatment since his girls' diagnosis in 2007.

Chris

Addi and Cassi's mother, Chris, ran Netscape's PR team and was a basketball star at UC Berkeley. She works closely with her husband and other parents with NPC-positive kids to find a cure.

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Addi and Cassi

Identical twins Addi and Cassi were diagnosed with Niemann-Pick Type C in October 2007 after two years of medical visits. In April 2009, when they were just 5 years old, they became the first Americans to fight NPC with cyclodextrin.

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Niemann-Pick Type C

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Symptoms

"The obvious things were they had an enlarged spleen and a mildly enlarged liver...verbal things and some of the other more dramatic stuff came along quite a bit later."

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Cyclodextrin

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Using Cyclodextrin

"Right now Cassi gets the injection in her back and Addi gets her injection right into a little port that's just right below her scalp. We do that because the outcome of the Niemann-Pick disease is well understood..."

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Early Intervention

"It might be really hard as a parent to take that step if your child is fully functional...if you know the child has NPC, the earlier the intervention you can do, the better."

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Results

Family

Since starting cyclodextrin, the Hempels have seen not only seen a halt to the progression of symptoms, but have even seen improvements.

Dr. Caroline Hastings

Cyclodextrin helps the girls with communication and focus by reversing some effects of NPC, notably their hearing.

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Administering Cyclodextrin

Intravenous (IV)

This was the first treatment method for Addi and Cassi - a continuous infusion of cyclodextrin over 4 days.

Intrathecal (IT)

In October 2012, Addi and Cassi began to receive cyclodextrin directly into the spinal fluid.

Intracerebral (ICV)

Addi gets cyclodextrin by a third method: intracerebral (ICV) treatment via a port in her scalp.

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On Cyclodextrin

Pursuing

Knowing that early-onset NPC meant that Addi and Cassi were only expected to live to the age of 10, Hugh and Chris made it their mission to find a way to help their daughters.

Recommending

For families battling NPC, choosing cyclodextrin comes with risks. The benefits, however, are potentially huge.

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Cannabis Oil

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Cannabis Oil

"We started implementing cannabis oil into their program and we've seen a pretty big reduction in their seizures..."