01/16/2023 More Movement

 01/16/2023

Movement on all five left toes. Jacob no longer has to concentrate to move them. The movement is very small, but still present. Core strength continues to improve.

01/09/2023 #5 ION363 Dose

 01/09/2023

5th ION363/Jacifusen dosing! Everything went great! Jacob may soon be moved to the open label (this means no more possibility of a placebo… Guaranteed drug). Shooting for June… We will find out in April, at our next appointment. 

Bloodwork shows liver issues. Possible Epstein-Barr virus or hepatitis A. I believe these issues are being caused by the ALS medicine (Riluzole). Liver damage is a known side effect.

01/05/2023 New Movement

 01/05/2023

Today at Teays Physical Therapy, Ben discovered new movement and Jacobs ankles and feet, which would allow them to slightly rotate! Still, unsure if this is placebo or actual drug, but positive God's got this!