So far so….

My first trip to Kansas City and Kansas Univ Medical Center (KUMC) was Sept 10th. This was to meet members of the research team and go through a battery of tests to further screen and baseline my physicals, auditory, and vestibular (balance) values.

Unfortunately, Dr Staecker was late returning from Berlin and I did not get a chance to talk with him about the trial and my surgery ( i.e. dosing).

Dr Hinrich Staecker will be doing my surgery and is the lead of the Kansas Univ part of the three center gene trial.

Dr Lawrence Lustig heads the Columbia Univ team and Johns Hopkins is the third team.

So far, all the testing indicates that I am a good candidate for the gene trial. There will be one more round of tests at KUMC prior to surgery and that will take place Oct 11, 2018. It will include an MRI for evaluation and mapping purposes.

I remain incredibly impressed with the entire research team that I have met with so far. A little anxiety reduction is good. Looking forward to speaking with Dr Staecker in Oct as well.
It now looks like surgery will be the end of October or mid-November at this point.

Am told that there will now be a total of about 30 surgeries done in this very initial trial. So far 17 have been completed.

In closing this update, one fascinating fact I learned during my testing in September was that many animals, including birds can repair their hearing as they go through a life span because the gene that causes the regrowth of the hearing hair cells remains “expressed” or open their entire life. In humans and mammals, the gene is turned “off” after development. This trial attempts to jump start that growth/repair again.

1 Comment

  1. Heidi Lovato September 25, 2018 at 12:13 pm

    Sounds like things are progressing nicely and your surgery is approaching fast, October is next week already!! Learned something new in reading your post – about the animals being able to repair their hearing, interesting!