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KC2U2

Distinguished member
Joined
Sep 20, 2010
Messages
231
Reason
PALS
Diagnosis
09/2010
Country
US
State
LA
City
Broussard
I received a call yesterday from my ALSA patient services rep with news that there is an opportunity to get involved in a stem cell clinical trial going on in the New Orleans area. After a call and some phone screening, I have a visit with the Dr Friday for assessment to see if I qualify for the trial. Here's the info:


ALS TDI (ALS Therapy Development Institute) :: Clinical Trial Details
 
Heading over to New Orleans area for first visit, then spending the weekend at my sister's house. Dinner with my Mom tonight, nephew's baseball game tomorrow. Have a great weekend everyone!
 
I wish you luck. My mom went through it also but in Germany. They said it will take 2 months to see some results.
My prayers are with you.
sandy
 
Update: I have been approved for participation in this trial, however, I have to change one of my diabetes prescriptions and be off of it for a month so we are looking at end of March to start the procedure
 
So excited for you! And thank you for your participation - you will be making a helpful contribution to ALS research.
 
Congrats to you.... I will keep you in my prayers! We looked into this trial, but they said it was full. Waiting on passports so dad can head to the XCell center in Germany. How do you get involved with trials in the states? Dad was going to go to a Drug trial locally, but then decided to try stem cell, and the place running the trial told him if he went out of the US for research/ stem cell, that he can not participate in any US trial. Is that true? Does anyone else have anymore information?
 
Got word today that the FDA has suspended the stem cell trial at TCA Cellular Therapy
 
What was the reason for the FDA halting the study, was it a safety problem?
Aly
 
I only see one Medical Doctor among the entire staff and no mention of where he recieved his degree or training
 
If you can let me know how it went! I would love to know!
 
goodluck to you ;) hope you know you are helping a lot of people. which group are you, by the way? the subjects are supposed to be divided into groups for comparison ...
 
Update: Spoke with my nurse at TCA Cellular, they have spent the two months answering the questions raised by the FDA and have applied to restart the trial. The FDA raised concerns because of the six original particiPants, they were unable to get the stem cells to reproduce in sufficient numbers to proceed in four of the patients. This is how I got in as one of the replacements for the first patients. The CEO will be at the support group meeting in new orleans Monday so hope for more good news soon.
 
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