​​"Chrissy inspired so many people of all ages, with her kindness and bravery, she continues to help advance medical research.  Researches and doctors at the University of North Carolina's school of Medicine who are studying samples donated after Chrissy's passing recently told her parents that Chrissy had saved years of testing and research to advance the progress of gene therapy. With a degenerative disease like GAN each passing moment can be critcal, and Chrissy is helping to save countless lives" 

from 2017 NORD Rare Impact Awards page 11

Chrissy Marie Grube  is a hero in every sense of the word.  She was a warrior and fought a courageous battle with a little known disease Giant Axonal Neuropathy (GAN).

In May of 2015 Chrissy was the first in the world to receive a spinal injection of the AAV9 virus which carried the new gene sequence which hopefully would place the correct gene which was incomplete that caused this horrific disease.

Chrissy and Amanda were both enrolled to participate in a clinical trial by the National Institute of Health for the research of GAN.

When Chrissy  was given the opportunity to be the first in the world to receive this protocol, she was asked why would she volunteer to be the first in the world.  The risks were astronomical including the possibility of it being fatal.  Her response" I am doing it to give my little sister a chance for a better life"  A true hero's response.

Due to her severe scoliosis Chrissy had back surgery in February of 2016 and passed away due to complications several days of her surgery on February 13, 2016.

Chrissy's legacy lives on.  Since her injection, Amanda and a few others have received the injection giving them the hope of a better life.  

In 2017 Chrissy was the Honoree of the RARE IMPACT AWARD by the National Organization of Rare Disorders (NORD).  Amanda bravely received the award for Chrissy postumously.

Chrissy's final legacy is that many thousands of children have the hope of a better life.  The doctors learned much from Chrissy's gift.  They learned that this type of gene replacement was indeed showing effacy and this type of protocol may be used in many neuro muscular diseases.


Dr. Gray Dr. Barucha Dr. Bonnerman

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