Denver Man Gets Gene Therapy to Restore Hearing

[Asian]

http://www.9news.com/story/news/health/2014/11/29/hearing-loss-gene-therapy/19669727/


DENVER - A local man is a making medical history.

Rob Gerk is the first person in the world to receive gene therapy to restore his hearing.

"It was very interesting," Gerk said."I'm very glad I could be a part of the process."

Gerk returned home after his surgery in October at the University of Kansas Hospital.

His doctor, Dr. Hinrich Staecker, researched combining genes and viruses for treatment for nearly two decades.

"We're able to build specially modified viruses that are not capable of causing disease," Dr. Staecker said. "We can use them to shuttle genetic material into the inner ear."

The goal is to regenerate cells that could restore hearing by triggering the growth of sensory receptors.

"It's amazing that technology has gotten to where we are now," Gerk said. "I remember grade school, I'd be reading about gene therapy but I didn't think I would be able to take part in it."

Gerk had spinal meningitis when he was 16 months old and lost most of his hearing. Using hearing aids and with intense speech therapy, Gerk says he has learned to fit in well with the hearing community. He is currently in the real estate business.

"I've always wanted to do better," Gerk said. "Not be limited by my abilities."

It won't be clear if the surgery was a total success until Gerk's ear fully hears sometime in December and Kansas doctors run additional tests.

Right now, he says, the differences are subtle.

"One change I noticed, I balance a lot better than before," he said.

Study participants must have severe hearing loss resulting from noise, medications or some diseases. The study can't help people who were born with hearing loss.

While the potential is huge, if the surgery is unsuccessful, participants can lose hearing all together.

 

[skoupidis]

Any news on his progress? They said that when his ears heal in December, they should know more.

 

[Champ]

No response on Google plus yet. Maybe he doesn't use that account anymore?

 

[spingee]

Try linkedin

 

[skoupidis]

May the new year bring hearing restoration to Rob Gerk. And many to follow!

 

[tomytl]

This treatment isn't likely to recover a lot of hearing data suggest. From what I read it's more effective
in the vestibular region of the inner ear, which also would a good effect.
Many researchers think that alone with atoh1 technologly they won't be successful.. Otherwise,
they don't know what Novartis did further research on it.
We have to hope and finally to see.

Grrets Tom

 

[Champ]

Still no response from him on G+

 

[WillR95]

Hi Champ, I've been emailing him on **************, maybe try him on that. He said he doesn't go on G + much. I last spoke to him last week and from my understanding, his ear has healed and he has regained his presurgery levels of hearing back, which is good news. But he will now see in his next few visits for hearing tests whether there are any gene therapy related results, which I guess will be in the next few weeks/months.

Hope that helps you

 

[rsmcfar]

Genvec, the company that owns the patent on cgf-166 was up a whopping 24% today. After many months of gradual decline from it's 52 week high which corresponds with the announcement that that the trials had been approved by the FDA. That must be a good sign?

 

[Champ]

Hi Champ, I've been emailing him on **********, maybe try him on that. He said he doesn't go on G + much. I last spoke to him last week and from my understanding, his ear has healed and he has regained his presurgery levels of hearing back, which is good news. But he will now see in his next few visits for hearing tests whether there are any gene therapy related results, which I guess will be in the next few weeks/months.

Hope that helps you

Thank you friend.

 

[OptimusPrimed]

Regardless of whether or not it works; the surgery was a success. They drilled a tiny hole using a laser in his stapes and then injected the drug through the oval window. The treatment method alone is ground breaking and we now have a safe way to access the cochlea directly.

 

[skoupidis]

Hi Champ, I've been emailing him on **************, maybe try him on that. He said he doesn't go on G + much. I last spoke to him last week and from my understanding, his ear has healed and he has regained his presurgery levels of hearing back, which is good news. But he will now see in his next few visits for hearing tests whether there are any gene therapy related results, which I guess will be in the next few weeks/months.

Hope that helps you

Thank you Will for leting us know about how Rob is doing.

 

[Hudson]

Hi Champ, I've been emailing him on ********* maybe try him on that. He said he doesn't go on G + much. I last spoke to him last week and from my understanding, his ear has healed and he has regained his presurgery levels of hearing back, which is good news. But he will now see in his next few visits for hearing tests whether there are any gene therapy related results, which I guess will be in the next few weeks/months.

Hope that helps you

This is very exciting and I'm happy that this man is willing to reach out to others with hearing loss. However, in the interest of protecting this man's privacy, let's not put his email address up on a public forum. If he is OK with it and likes to share his experiences, he can post his email or you can share it among yourselves in a private message. I'm not trying to be a hard ass here, but we really try to protect peoples' privacy. I'm going to edit any of the messages that contained his email to remove that reference. As I said above, you're welcome to speak with each other privately regarding his contact information if he is ok with it.

On a positive note, I absolutely hope he regains hearing ability and this works. I can't for the life of me believe that we are here talking about a hair cell regeneration study that's taking place. Years ago, people said it would take 50-100 years to happen.

 

[WillR95]

Yes sorry you're right, I'm sure he doesn't want to be recieving lots of emails all at once. I did try putting the address to Champ in a private message, but it would not let me because it was a URL link or something?

Anyway, as you say it's all positive stuff and a step in the right direction.

 

[Hudson]

Yes sorry you're right, I'm sure he doesn't want to be recieving lots of emails all at once. I did try putting the address to Champ in a private message, but it would not let me because it was a URL link or something?

Anyway, as you say it's all positive stuff and a step in the right direction.

Not a problem! I'm actually kind of glad that he's willing to share his experiences with people and I am interested to hear how this all goes for him. Does anyone know if he has accompanying tinnitus with his hearing loss?

 

[WillR95]

Yes he said that he does have tinnitus, and that whilst it was really bad as a kid when he first lost his hearing, it is manageable now, especially when he has his hearing aids in.

 

[spingee]

Yes he said that he does have tinnitus, and that whilst it was really bad as a kid when he first lost his hearing, it is manageable now, especially when he has his hearing aids in.

So did he experienced any improvment? They said in animals it worked in 3-6 weeks. And what about his balancing how better is it?

 

[WillR95]

I think he noticed straight away that his balance has improved. That's said in this article...

http://www.9news.com/story/news/health/2014/11/29/hearing-loss-gene-therapy/19669727/

He didn't mention whether it had improved his tinnitus. Like I said earlier he said that his tinnitus doesn't bother him much now, so maybe it has changed a bit and he's just not noticed it. But I don't think they know yet whether there's been any improvement in the hearing from his presurgery levels anyway. Any small changes will be noticed in the upcoming hearing tests I presume.

 

[tomytl]

Hi,
from what I know, this treatment isn't expected to get a big improvement in hearing. Most of scientists are
not very hopeful about. No harm to the person in the trial would already be a success.
But the researchers also said, they don't know how they probably could enhance (Novartis) the
concept of atoh1 delivery, so we don't know.
As already mentioned, if at least the delivery was successful, it may pave the way for other ways to
retrigger hair cell growth...

Greets Tom

 

[skoupidis]

Obviously they do aim to gain hearing, no purpose doing that treatment if they didn't. Hopefully, we will get good news from him and even if he gains some hearing, a tinnitus person may get just what he needs.

Do we know how much hearing the test animals got and how deaf they were? If the treatment was succesful in them there has to be a reason if it fails in humans. After all we all are mammals...

 

[rsmcfar]

http://osp.od.nih.gov/sites/default/files/1_1260_CGF166_Klickstein.pdf

The deafened mice had a 60% increase in the number of hair cells. I have on my office computer a pdf from a presentation GENVEC made earlier in the year, that is more user friendly. I will post it in the morning. The increase in hearing although not consistent across the hearing spectrum were significant. There was more improvement at the higher thresholds.

 

[skoupidis]

Does it say monkeys in there?

 

[rsmcfar]

They used monkeys to determine the location of the injection. I don't believe monkeys received the drug.

 

[OptimusPrimed]

http://osp.od.nih.gov/sites/default/files/1_1260_CGF166_Klickstein.pdf

The deafened mice had a 60% increase in the number of hair cells. I have on my office computer a pdf from a presentation GENVEC made earlier in the year, that is more user friendly. I will post it in the morning. The increase in hearing although not consistent across the hearing spectrum were significant. There was more improvement at the higher thresholds.

More improvement in the higher thresholds likely due to the fact that the higher frequency hair cell sites are the first places the drug reaches in the cochlea.

 

[tomytl]

Some more info in the New York Times
http://mobile.nytimes.com/2015/01/1...act-drug-makers-attention-.html?referrer&_r=0

 

[rsmcfar]

Genvec, the company that owns the patent on cgf-166, is up 75% in the last three days of trading. That makes me optimistic that someone knows this is showing promise.

 

[Champ]

Genvec, the company that owns the patent on cgf-166, is up 75% in the last three days of trading. That makes me optimistic that someone knows this is showing promise.

Investors jumping on the money train before it gets out of the station.

I kinda wanna get in on this Make some cash and treat my tinnitus at the same time? I like the sound of that.

 

[attheedgeofscience]

For those interested in following the progress in relation to Mr. Rob Gerk (the first man ever to undergo a procedure involving gene therapy for hearing restoration), here is the progress report I have received from him (I have been in contact with him twice - last report was received yesterday):

• The intervention itself was carried out late October, 2014.
• Every 30 days post surgery, he goes for a follow-up visit with the University Hospital of Kansas City.
• The follow-up tests are very thorough (and last nine hours, apparently).
• He did not have balance problems prior to the intervention, but the tests he undergoes are such that they push his physical abilities to their limits and it was during one of these tests that he discovered that his balance - pre-surgery - was not as good as it could be; his balance has since - post-surgery - improved (but his balance problems were never an issue for him in daily life, prior to the intervention).
• He was only treated in one ear (for safety reasons).
• At this point it is still unclear if his hearing has improved (I asked if he had audiograms to share); he will return to KC for two more follow-up visits; he says that he remains optimistic.
• He has had tinnitus since young childhood; he says it is all he has ever known. So far, there are no improvements with his tinnitus. He mentioned that when wearing hearing aids, his tinnitus is essentially gone. But even without hearing aids, he is able to cope alright (in terms of his tinnitus). His main problem is the hearing impairment he has.
• Specifically for his tinnitus, he says that he would rate the severity as a 7-9 on a 10-point scale. He has used meditation and mind exercises to block it or minimize it. He does not see it as a hindrance.

I will try to stay in touch with him on an ad-hoc basis.

attheedgeofscience
21/JAN/2015.

 

[tomytl]

For those interested in following the progress in relation to Mr. Rob Gerk (the first man ever to undergo a procedure involving gene therapy for hearing restoration), here is the progress report I have received from him (I have been in contact with him twice - last report was received yesterday):

• The intervention itself was carried out late October, 2014.
• Every 30 days post surgery, he goes for a follow-up visit with University Hospital of Kansas City.
• The follow-up tests are very thorough (and last nine hours, apparently).
• He did not have balance problems prior to the intervention, but the tests he undergoes are such that they push his physical abilities to their limits and it was during one of these tests that he discovered that his balance - pre-surgery - was not as good as it could be; his balance has since - post-surgery - improved (but his balance problems were never an issue for him in daily life, prior to the intervention).
• He was only treated in one ear (for safety reasons).
• At this point it is still unclear if his hearing has improved (I asked if he had audiograms to share); he will return to KC for two more follow-up visits; he says that he remains optimistic.
• He has had tinnitus since young childhood; he says it is all he has ever known. So far, there are no improvments with his tinnitus. He mentioned that when wearing hearing aids, his tinnitus is essentially gone. But even without hearing aids, he is able to cope alright (in terms of his tinnitus). His main problem is the hearing impairment he has.
• Specifically for his tinnitus, he says that he would rate the severity as a 7-9 on a 10-point scale. He has used meditation and mind exercises to block it or minimize it. He does not see it as a hindrance.

I will try to stay in touch with him on an ad-hoc basis.

attheedgeofscience
21/JAN/2015.

Thank you ATEOS for the shared information!

Prior to this trial I had some conversations with some top-notch researchers. All of them
told me, that this treatment Rob Gerk received, isn't likely to work, especially not
with hearing issues. They think that this Atoh1 technique doesn't do a lot in the adult
ear. But they also stated, that this therapy also hided in the labs of Novartis and that they
might did improve something. If there won't no harm to the patients, they already
stated it as a success...

Maybe some different doses will make a difference in next participants.
In fact, if they just could grow a few hair cells in the human inner ear, it would be a huge success.

I'm personally very curiouse what comes next with Audion Therapeutics. I guess they are working close
with the Massachussetts Eye and Ear and with those advances using notch signaling. (Albert Edge)

Greets Tom

 

[spingee]

For those interested in following the progress in relation to Mr. Rob Gerk (the first man ever to undergo a procedure involving gene therapy for hearing restoration), here is the progress report I have received from him (I have been in contact with him twice - last report was received yesterday):

• The intervention itself was carried out late October, 2014.
• Every 30 days post surgery, he goes for a follow-up visit with University Hospital of Kansas City.
• The follow-up tests are very thorough (and last nine hours, apparently).
• He did not have balance problems prior to the intervention, but the tests he undergoes are such that they push his physical abilities to their limits and it was during one of these tests that he discovered that his balance - pre-surgery - was not as good as it could be; his balance has since - post-surgery - improved (but his balance problems were never an issue for him in daily life, prior to the intervention).
• He was only treated in one ear (for safety reasons).
• At this point it is still unclear if his hearing has improved (I asked if he had audiograms to share); he will return to KC for two more follow-up visits; he says that he remains optimistic.
• He has had tinnitus since young childhood; he says it is all he has ever known. So far, there are no improvments with his tinnitus. He mentioned that when wearing hearing aids, his tinnitus is essentially gone. But even without hearing aids, he is able to cope alright (in terms of his tinnitus). His main problem is the hearing impairment he has.
• Specifically for his tinnitus, he says that he would rate the severity as a 7-9 on a 10-point scale. He has used meditation and mind exercises to block it or minimize it. He does not see it as a hindrance.

I will try to stay in touch with him on an ad-hoc basis.

attheedgeofscience
21/JAN/2015.

Thx for information.
Its strange becouse they had some good results in animals in their presentation and on human nothing?