Post by Amy Lombardi on Mar 31, 2009 9:34:20 GMT -5
Subject: Gene Threapy in New York
Name: Victoria
Date Posted: Oct 9, 08 - 11:59 AM
Email: Click here to Email
Message: Hello
I was wondering if any any of you had taken part or knew anything about the gene threapry trial that they were doing in NYP Cornel Weiss. Harry has LINCL and he was an early diagonis he is only 4.5 and his szs are not that bad so I really hoping that the trial will start soon.
If you were in the early trials I would love to hear if you think it went well or not i would love an honest opinion.
If anybody else has any info about the trial or what their requirements are I would love to hear it.
Thank you in advance
Kind regards
Victoria
Name: jocelyn
Date Posted: Oct 13, 08 - 4:32 PM
Email: Click here to Email
Message: Hi,
I have been involved in the gene therapy treatment at Cornell with both of my children. If you would like to contact me I would be happy to give you any information I have. Email sethkenzie@hotmail.com
Regards
Jocelyn
Name: Nikki Vigil
Date Posted: Oct 15, 08 - 11:56 AM
Email: Click here to Email
Message: My husband had a call with Dr. Crystal at Cornell last Monday. He is not ready to start Phase II of the trial and will not be until atleast January. If you want to contact my husband to ge the details, his address is jovigil@aol.com. His name is Joe.
Name: Miranda Goranflo
Date Posted: Oct 20, 08 - 8:38 AM
Email: Click here to Email
Message: We too have been waiting for the gene therapy to start at Cornell. I have spoken to Dr. Crystal in the past and have spoken to several other parents that have spoken to him. Every time we hear anything from him about the trial, the date gets pushed back further and further. This is so frustrating to all of us. Based on what Dr. Crystal is telling us, the only thing holding up the trial is government funding. I have already contacted our local congressmen and senators, here in KY., urging them to help us get the funding needed to start the trial. I think that if they can afford 700 billion to bail out wall street, they can afford to fund this trial to save our children's lives. This is an election year and I think that may be to our advantage. After all, they do work for us. I strongly encourage everyone to contact your local state representatives and plead with them to help us get the funding needed to get this thing going already. I don't know what else we can do, but I do believe we need to rally together. Dr. Crystal has also said that if we can raise 3 1/2 million dollars, he will treat 4 children... impossible. They will have the government funding by then. I have 2 children w/ LINCL, my daughter, Hailey, has already been to China for stem cells (as she is too far advanced for the trial), but our 3 y/o son, Carter, desperately needs to be a part of this trial... soon. He may not have a year to wait. I will do whatever it takes to get this thing going, but can't do it alone. If anyone has any ideas, please share. We want this so badly for our son. Thanks... and sorry to rant!
Name: Victoria
Date Posted: Oct 9, 08 - 11:59 AM
Email: Click here to Email
Message: Hello
I was wondering if any any of you had taken part or knew anything about the gene threapry trial that they were doing in NYP Cornel Weiss. Harry has LINCL and he was an early diagonis he is only 4.5 and his szs are not that bad so I really hoping that the trial will start soon.
If you were in the early trials I would love to hear if you think it went well or not i would love an honest opinion.
If anybody else has any info about the trial or what their requirements are I would love to hear it.
Thank you in advance
Kind regards
Victoria
Name: jocelyn
Date Posted: Oct 13, 08 - 4:32 PM
Email: Click here to Email
Message: Hi,
I have been involved in the gene therapy treatment at Cornell with both of my children. If you would like to contact me I would be happy to give you any information I have. Email sethkenzie@hotmail.com
Regards
Jocelyn
Name: Nikki Vigil
Date Posted: Oct 15, 08 - 11:56 AM
Email: Click here to Email
Message: My husband had a call with Dr. Crystal at Cornell last Monday. He is not ready to start Phase II of the trial and will not be until atleast January. If you want to contact my husband to ge the details, his address is jovigil@aol.com. His name is Joe.
Name: Miranda Goranflo
Date Posted: Oct 20, 08 - 8:38 AM
Email: Click here to Email
Message: We too have been waiting for the gene therapy to start at Cornell. I have spoken to Dr. Crystal in the past and have spoken to several other parents that have spoken to him. Every time we hear anything from him about the trial, the date gets pushed back further and further. This is so frustrating to all of us. Based on what Dr. Crystal is telling us, the only thing holding up the trial is government funding. I have already contacted our local congressmen and senators, here in KY., urging them to help us get the funding needed to start the trial. I think that if they can afford 700 billion to bail out wall street, they can afford to fund this trial to save our children's lives. This is an election year and I think that may be to our advantage. After all, they do work for us. I strongly encourage everyone to contact your local state representatives and plead with them to help us get the funding needed to get this thing going already. I don't know what else we can do, but I do believe we need to rally together. Dr. Crystal has also said that if we can raise 3 1/2 million dollars, he will treat 4 children... impossible. They will have the government funding by then. I have 2 children w/ LINCL, my daughter, Hailey, has already been to China for stem cells (as she is too far advanced for the trial), but our 3 y/o son, Carter, desperately needs to be a part of this trial... soon. He may not have a year to wait. I will do whatever it takes to get this thing going, but can't do it alone. If anyone has any ideas, please share. We want this so badly for our son. Thanks... and sorry to rant!