So, are they saying that a cure should be out within the decade they think?
We don't even know if hair cell
restoration will help a person with
hearing loss. There was a candidate of the GenVec - CGF166 clinical trial named Jeff Bricker. Back in late Decemeber, while I was on the hunt to find a hair cell hearing loss, I stumbled across Jeff. I believe I found his name on a blog-ish site where a relative of his was keeping an update on how his trial was going. I decided to find the man on Facebook and friend him so
I could learn much more about this amazing new feat.
I was in the
hair cell loss = hearing loss phase at the time too.
Jeff effortlessly accepted my request on Facebook and that day I spoke to him through the Facebook chat.
Key points to what he told me the few times I spoke to him over a period of months back in the winter:
1) He was one of the first out of all the GenVec patients to receive a 40 micro liter dose injection of CGF166.
2) He had many instances of picking up new noises. Jeff stated to me, "It sounds sometimes like a water cooler when the bubbles come up. Other times it sounds like chords being played on an organ. Very weird and nerve racking sometimes."
He also stated that he would pick up robotic like sounds and that he's always had trouble
hearing in
noisy areas.
3) Jeff's right ear was used for the injection. I asked Jeff one day what music sounded like with his noticeable hearing changes. He stated this, "I tried listening through the Bluetooth through my hearing aids and then taking the aids out and using ear buds. The results were the same. The sound was only coming into my left ear and poor quality at that. The right ear that I had the injection on didn't pick up the sounds. Don't know what to make of it as my right ear has been all over the board this week picking up weird sounds internally if that makes any sense. I guess that I will have to wait and see what develops."
4) In the end, it seemed like the opportunity to create better hearing for Jeff through this trial, only caused more difficulties.
This post on Jeff's Facebook on June 22, 2016,
sealed the deal.
"Tuesday will mark the final step in a long journey to regain some hearing again. The Gene Therapy Trial didn't work on me and in the case of a few other Lab Rats, like myself, actually created more hearing loss. I will get a Cochlear Implant on Tuesday that hopefully will restore a portion of my hearing. Can't wait to become Bionic !"
Since Jeff posted this bold statement on his Facebook, it's best to believe that those associated with Novartis/GenVec, allowed him to do so. Therefore, I should have no problem posting information about the results of such a groundbreaking hearing loss trial. I even contacted Jeff about 2 hours ago to ask him if it was okay to post this. He responded, "Sure nothing confidential there, hope it helps."
If needed be, I can provide visual documents of my conversations with Jeff.
Member
