Jerry Silver talks to me - Page 8

keeping on · 04-11-2012, 02:42 PM

Jawaid, got a reply from Dr Cohen at Acorda. He started by emphasizing the understanding of the critcal nature of our needs. He went on to say that a couple of years before even applying for clinical trials. I respnded that this is good but too late for many of us.

Anthony

Tayberry · 04-11-2012, 03:05 PM

The reply email most will receive:

Dear Ms. Purves,

Thank you for your message. Dr. Cohen is traveling today, and has asked me to respond on his behalf.

As you may know, Acorda was founded 17 years ago with a mission to develop therapies that would help people who live with spinal cord injury and other neurological disorders; we remain passionately committed to that mission today. Over the years, Drs. Cohen, Blight, Caggiano and I have spoken with hundreds – maybe thousands - of people in the SCI community and we are deeply familiar with the desperate need for new treatments in this area. Even so, we know that we cannot fully imagine how urgently you and the many thousands of other sufferers with SCI are hoping for real progress.

However, we still have a number of scientific challenges to address before we can take chondroitinase to clinical trials. I hope that we will be able to address these challenges successfully, but we do expect that this will take some time, possibly a few more years before we are able to do so. I assure you we are working as hard and as fast as we can to deliver on this progress.

I invite you to contact me directly by email or phone at any time if I can provide more information or answer your questions. I would be delighted to speak with you in more depth.

Warmest regards,
Tierney Saccavino

east dragon · 04-11-2012, 03:17 PM

it is too late!

lynnifer · 04-11-2012, 04:32 PM

Keep the pressure on.

keeping on · 04-11-2012, 04:36 PM

Lynnifer and gang, we must and will keep the pressure on, but I don
t know what we can do. Fast track status might help, but Acorda might have to apply to FDA for that. But yes, keep pressure on.

kivi66 · 04-11-2012, 05:46 PM

Quote:

Originally Posted by jsilver

They're just fine. No side effects. We are seeing strong return of respiratory function one and one-half years after SCI with the use of a single injection of ch'ase. Our PNS bridged animals with complete transection are just fine.

Excellent news, thanks; will we hear the same about the pigs? Dr.Silver, explain us, please, mechanism, by means of which the single injection of chondroitinase makes the impossible possible. Are we entering the era of immortality?

Christopher Paddon · 04-11-2012, 06:10 PM

I asked Jerry Silver if he agreed with Acorda that a few more years is still needed. His reply was:

"NO I DON'T AGREE. If is possible to keep the pressure on then this might help speed things along. What I will do on my end is to continue to show good solid scientific evidence of the beneficial properties of this therapy. If we can continue to show evidence of a strong effect at chronic stages then this will be the best thing that I can do."

jsilver · 04-11-2012, 06:34 PM

Quote:

Originally Posted by kivi66

Excellent news, thanks; will we hear the same about the pigs? Dr.Silver, explain us, please, mechanism, by means of which the single injection of chondroitinase makes the impossible possible. Are we entering the era of immortality?

While we don't understand all the underlying events that bring about rapid recovery after such a long time, our evidence suggests that there is continuing sprouting that occurs very slowly over long periods of time after SCI but, never-the-less, the potential return of function is being strongly inhibited by proteoglycans in the perineuronal net. the addition of the enzyme allows this long built up pool of new connections to manifest itself. Importantly, the presence of the enzyme allows the newly elicited function to be patterned and regular rather than chaotic.

lynnifer · 04-11-2012, 06:46 PM

Too bad we couldn't see a 24/7 webcam of an experiment in progress on an animal - or even the lab with people working. Be a great way to raise funds as I would support that! I've said it before but it never caught on.

Chaz19 · 04-11-2012, 06:47 PM

I wrote a letter as well. Something of this magnitude could necessitate a national well coordinated campaign. I think we need to reach out beyond our online community to the large non-profits who represent us. We need for more people to know this potential therapy.

04-11-2012, 04:32 PM	#74
lynnifer Senior Member Join Date: Aug 2002 Location: Windsor ON Canada Posts: 15,311	Keep the pressure on. __________________ I think over again my small adventures, My fears, Those small ones that seemed so big, For all the vital things I had to get and to reach; And yet there is only one great thing, The only thing, To live to see the great day that dawns And the light that fills the world. Anonymous (Inuit, 19th century) T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

04-11-2012, 06:46 PM	#79
lynnifer Senior Member Join Date: Aug 2002 Location: Windsor ON Canada Posts: 15,311	Too bad we couldn't see a 24/7 webcam of an experiment in progress on an animal - or even the lab with people working. Be a great way to raise funds as I would support that! I've said it before but it never caught on. __________________ I think over again my small adventures, My fears, Those small ones that seemed so big, For all the vital things I had to get and to reach; And yet there is only one great thing, The only thing, To live to see the great day that dawns And the light that fills the world. Anonymous (Inuit, 19th century) T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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04-11-2012, 02:42 PM	#71
keeping on Senior Member Join Date: Oct 2009 Posts: 1,893	Jawaid, got a reply from Dr Cohen at Acorda. He started by emphasizing the understanding of the critcal nature of our needs. He went on to say that a couple of years before even applying for clinical trials. I respnded that this is good but too late for many of us. Anthony

04-11-2012, 03:05 PM	#72
Tayberry Junior Member Join Date: Feb 2012 Location: UK Posts: 29	The reply email most will receive: Dear Ms. Purves, Thank you for your message. Dr. Cohen is traveling today, and has asked me to respond on his behalf. As you may know, Acorda was founded 17 years ago with a mission to develop therapies that would help people who live with spinal cord injury and other neurological disorders; we remain passionately committed to that mission today. Over the years, Drs. Cohen, Blight, Caggiano and I have spoken with hundreds – maybe thousands - of people in the SCI community and we are deeply familiar with the desperate need for new treatments in this area. Even so, we know that we cannot fully imagine how urgently you and the many thousands of other sufferers with SCI are hoping for real progress. However, we still have a number of scientific challenges to address before we can take chondroitinase to clinical trials. I hope that we will be able to address these challenges successfully, but we do expect that this will take some time, possibly a few more years before we are able to do so. I assure you we are working as hard and as fast as we can to deliver on this progress. I invite you to contact me directly by email or phone at any time if I can provide more information or answer your questions. I would be delighted to speak with you in more depth. Warmest regards, Tierney Saccavino

04-11-2012, 03:17 PM	#73
east dragon Senior Member Join Date: Mar 2011 Posts: 160	it is too late!

04-11-2012, 04:36 PM	#75
keeping on Senior Member Join Date: Oct 2009 Posts: 1,893	Lynnifer and gang, we must and will keep the pressure on, but I don t know what we can do. Fast track status might help, but Acorda might have to apply to FDA for that. But yes, keep pressure on.

04-11-2012, 06:10 PM	#77
Christopher Paddon Senior Member Join Date: Oct 2001 Location: New Zealand Posts: 3,207	I asked Jerry Silver if he agreed with Acorda that a few more years is still needed. His reply was: "NO I DON'T AGREE. If is possible to keep the pressure on then this might help speed things along. What I will do on my end is to continue to show good solid scientific evidence of the beneficial properties of this therapy. If we can continue to show evidence of a strong effect at chronic stages then this will be the best thing that I can do."

04-11-2012, 06:47 PM	#80
Chaz19 Senior Member Join Date: Dec 2003 Location: boston area Posts: 1,249	I wrote a letter as well. Something of this magnitude could necessitate a national well coordinated campaign. I think we need to reach out beyond our online community to the large non-profits who represent us. We need for more people to know this potential therapy.