Post by Amy Lombardi on Apr 1, 2009 9:27:13 GMT -5
Subject: Juvenile drug trial
Name: Lance Johnston
Date Posted: Jan 26, 09 - 1:14 PM
Email: Click here to Email
Message: Below is a more proper wording for the juvenile drug trial to be conducted at the University of Rochester.
The U.S. Food and Drug Administration (FDA) determined that the University of Rochester research group can move ahead with the drug trial for children with Juvenile Batten disease that has been talked about over the past year. This is good news. There are still several steps to be accomplished before the investigators are ready to begin enrollment. There will be an announcement on this site when they are ready to begin recruitment.
If you are interested in this trial, please call me at 800-448-4570.
Name: Corrina Dahl
Date Posted: Jan 22, 09 - 1:02 PM
Message: Awesome news! ;D
Name: Susan Klee
Date Posted: Jan 22, 09 - 5:01 PM
Email: Click here to Email
Message: Wonderful News Lance! Thank you for sharing.
Name: Marcia Miller
Date Posted: Jan 25, 09 - 6:52 PM
Email: Click here to Email
Message: Hi Lance, That is such great news. I know how hard you have been working to get this far. God Bless You for all that you do. God willing, please consider Ricky Ricketts for this trial. I know there are so many of us asking for our children.
Thanks and God Bless.
Marcia
Name: John & Tina Heuchan
Date Posted: Jan 26, 09 - 9:43 AM
Email: Click here to Email
Message: More Great new!!! Thanks. We now that they have been working hard to get this going.
John and Tina
Name: Bonnie R. Catalano
Date Posted: Jan 26, 09 - 3:40 PM
Email: Click here to Email
Message: I have a dear friend who lives in Scotland, Her son Craig, passed away from Batten Disease.
It is truly heart renching for his family. His Mother is an RN also, so it is even worse on his parents.
I know him through them. I have pictures of Craig Johnston, a wonderful young man.
I am glad to know that now there is a drug for this horrible disease.
My heart goes out to all families, who have someone with this disease. Please know my Thoughts and Prayers
are with you all
Bonnie R. Catalano
U.S.A.
Name: friend
Date Posted: Jan 28, 09 - 5:11 AM
Message: Is this to reverse the effects or just slow down the process?
Name: Bonnie R. Catalano
Date Posted: Jan 28, 09 - 5:45 AM
Email: Click here to Email
Message: I really don't know I only have a friend in Scotland who's son died of this disease but I will email her and ask for you.
Bonnie R. Catalano
Name: katarina calderon
Date Posted: Jan 28, 09 - 8:06 AM
Email: Click here to Email
Message: No one is really sure what the effects (if any) of Cell Cept will be on NCL3, hence the trial. I do believe though that the expectation is to slow down the disease's progression, not to reverse damage already done.
Name: Lance Johnston
Date Posted: Jan 26, 09 - 1:14 PM
Email: Click here to Email
Message: Below is a more proper wording for the juvenile drug trial to be conducted at the University of Rochester.
The U.S. Food and Drug Administration (FDA) determined that the University of Rochester research group can move ahead with the drug trial for children with Juvenile Batten disease that has been talked about over the past year. This is good news. There are still several steps to be accomplished before the investigators are ready to begin enrollment. There will be an announcement on this site when they are ready to begin recruitment.
If you are interested in this trial, please call me at 800-448-4570.
Name: Corrina Dahl
Date Posted: Jan 22, 09 - 1:02 PM
Message: Awesome news! ;D
Name: Susan Klee
Date Posted: Jan 22, 09 - 5:01 PM
Email: Click here to Email
Message: Wonderful News Lance! Thank you for sharing.
Name: Marcia Miller
Date Posted: Jan 25, 09 - 6:52 PM
Email: Click here to Email
Message: Hi Lance, That is such great news. I know how hard you have been working to get this far. God Bless You for all that you do. God willing, please consider Ricky Ricketts for this trial. I know there are so many of us asking for our children.
Thanks and God Bless.
Marcia
Name: John & Tina Heuchan
Date Posted: Jan 26, 09 - 9:43 AM
Email: Click here to Email
Message: More Great new!!! Thanks. We now that they have been working hard to get this going.
John and Tina
Name: Bonnie R. Catalano
Date Posted: Jan 26, 09 - 3:40 PM
Email: Click here to Email
Message: I have a dear friend who lives in Scotland, Her son Craig, passed away from Batten Disease.
It is truly heart renching for his family. His Mother is an RN also, so it is even worse on his parents.
I know him through them. I have pictures of Craig Johnston, a wonderful young man.
I am glad to know that now there is a drug for this horrible disease.
My heart goes out to all families, who have someone with this disease. Please know my Thoughts and Prayers
are with you all
Bonnie R. Catalano
U.S.A.
Name: friend
Date Posted: Jan 28, 09 - 5:11 AM
Message: Is this to reverse the effects or just slow down the process?
Name: Bonnie R. Catalano
Date Posted: Jan 28, 09 - 5:45 AM
Email: Click here to Email
Message: I really don't know I only have a friend in Scotland who's son died of this disease but I will email her and ask for you.
Bonnie R. Catalano
Name: katarina calderon
Date Posted: Jan 28, 09 - 8:06 AM
Email: Click here to Email
Message: No one is really sure what the effects (if any) of Cell Cept will be on NCL3, hence the trial. I do believe though that the expectation is to slow down the disease's progression, not to reverse damage already done.