Re: Update on NIH Trial

YEAH!!!

so happy to read this update-

Lots of hugs,

Catherine

Re: Update on NIH Trial

I'm not sure if this has been posted elsewhere but I wanted to update that we've recently heard that this trial is on hold. The nurse at NIH we were corresponding with (we'd already had bloodwork done and were preparing to go for our first visit) emailed us with the information. She said the trial was "on hold as we make some updates and actively look for more space for our labs" and that they were uncertain as to when it would reopen.

Has anyone else heard similarly? Any idea what's going on? We were very disappointed to see a potential avenue for treatment closed down.

Re: Update on NIH Trial

Maria....Melinda had mentioned the difficulties with lab space.  Additionally, I was made aware of another problem related to the molecular testing lab, which should resolve soon.  There is a chance that I can address this issue with Dr. Rosenberg, tomorrow.  He will be presenting at the AAADV  meeting (https://www.acceleratingworkshop.org/)  I am participating as well and will keep you posted on the outcome.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on NIH Trial

Update:   I spoke with Dr. Rosenberg.  The hold-up was related to enlarging the old lab.  Their office will re-open in two weeks. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on NIH Trial

Yes, that is right. Thanks Marion! They are doing everything as fast as they can to get everything and everyone back up and running! I am sure they will contact you Maria as soon as it is a go.

Melinda

Re: Update on NIH Trial

Not sure they will contact me, Melinda.  It might be best for us to reach out to their office in two weeks,  In any case, anyone can get the update.   Whoever knows first, please share with us all. 
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on NIH Trial

Oh, ok, great. From the email I was worried it would be postponed for much longer. I'm glad to hear it should be back up and running soon! Thank you for reaching out to find the information.

Re: Update on NIH Trial

You are welcome, dear Maria, please stay in touch.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on NIH Trial

We were informed that as of May 30th the trial is once again open.  Hooray!

Re: Update on NIH Trial

bpbeinlich.....thanks for sharing this good news with us.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER