END AHC WITH AAV (Gene Therapy Project)
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END AHC WITH AAV (Gene Therapy Project)
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Tanner was dianosed with Alternating Hemiplegia of Childhood at 8 months old, though his first episodes began only 24 hours after birth. AHC is a one in a million neuromuscular disorder with only 300 known cases in the United States. AHC affects EVERY single system of Tanner's body 24 hours a day. Whether it is his muscles involuntarily stiffening and contorting, causing him horrific pain, or his body going into complete paralysis, all the way up to his vocal chords, he is a WARRIOR as are all of his AHC friends and their families. We are always hopeful, and more so DESPERATE for a cure. Treatment options differ from child to child, but the ultimate goal is a CURE! A cure may be on the horizon as our teams of incredibly dedicated specialists work tirlessly to get gene therapy going for our small but mighty AHC community. If you are able, please share our page and donate if at all possible. $1 helps and awareness is key. Thank you for continuing to be a part of our journey!

ABOUT AAV Project and Other Research

With funds raised from the AHC Foundation, we will support AAV gene therapy and other research related to the project.  We believe a path has been identified to a viable permanent treatment: gene therapy.  The gene therapy we propose will involve inserting a functional copy of the ATP1A3 gene into a virus (an adeno-associated virus or AAV) that has been stripped of its harmful payload and its ability to reproduce. The virus will then be injected into the cerebrospinal fluid and will carry the functional gene to the cells in the brain that are failing. By delivering additional functional copies of the gene, we should be able to rescue those cells, and treat the disease permanently. 

Learn more about the project here. 

Supporters
Name Date Amount Comments
Mary & Bo Kozak 04/30/2019 $100.00  
Suffia Madsen 04/29/2019 $100.00  
Lynn Egan 04/04/2019 $1.00  
Steve Penny 03/02/2019 $50.00 You are in our prayers.
Kati Waller 02/28/2019 $10.00 I love you tanner!
  Total $261.00  
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