Royan Institute

[AfraidButNotAlone]

I have been actively and intensely searcing the clinical trials government website for clinical trials. The amount of information there is ridiculously large and sparse at the same time. Go figure, a gov website.

I found a number of trials that are recruiting and doing stem cell research. I am Catholic and will not entertain the idea of participating in any research using fetal stem cells. That limited my options. Further limiting my options is the fact that I live in the Middle East.

Good news though

The Royan Institute in Tehran has two autologous stem cell trials for which they are currently recruiting. I have been in contact with them and it looks as if, initially anyway, I qualify for inclusion in the study!

I still don't have all the details. They first needed to know my test results (FRS, FVC) and then needed to know if I could actually get to Iran, I can

For you praying folks, please say a prayer that this works out. For those of you who don't pray, please send some positive energy my way!

I'll update as I learn more.

I hope this post doesn't jinx anything ;-)

 

[veggiepete]

Best of luck for the trial..fingers crossed for you..I am now beginning to look for trials or research advancements here in the uk..

 

[vickim]

You got it. Sending a prayer now and {{{hugs}}} your way. Good luck and keep us posted.

 

[Nikki J]

Prayers for the best possible outcome ( trial inclusion and stabilization or even improvement)

 

[hjlindley]

The NEALS website has an incredible information about clinical trials, but is US-based. Good luck, be careful, and asked lots of questions.
Hollister

 

[AfraidButNotAlone]

I'd love a US based trial, but..... I am not US Based

Currently living in the Middle East

 

[affected]

do keep us updated, I so hope you get to participate and even more so get a result from the trial!

 

[AfraidButNotAlone]

Thety said that I should start making travel/visa plans, but I don't have the definite date yet.

Marrow aspiration, then 2-3 months later the stem cell injection.

I'll let you know when I know!

 

[bowser]

I have been actively and intensely searcing the clinical trials government website for clinical trials. The amount of information there is ridiculously large and sparse at the same time. Go figure, a gov website.

I found a number of trials that are recruiting and doing stem cell research. I am Catholic and will not entertain the idea of participating in any research using fetal stem cells. That limited my options. Further limiting my options is the fact that I live in the Middle East.

Good news though

The Royan Institute in Tehran has two autologous stem cell trials for which they are currently recruiting. I have been in contact with them and it looks as if, initially anyway, I qualify for inclusion in the study!

I still don't have all the details. They first needed to know my test results (FRS, FVC) and then needed to know if I could actually get to Iran, I can

For you praying folks, please say a prayer that this works out. For those of you who don't pray, please send some positive energy my way!

I'll update as I learn more.

I hope this post doesn't jinx anything ;-)

I admire your convictions ( 2nd paragraph )
So easy to toss them aside when we want to benefit personally.

 

[skipper66]

We have a member on here who doesn't post anymore named Ted. His profile name is Ted H5. He is a devout Catholic and would never participate in using fetal stem cells either. He has used stem cells in some clinical trials here in the United States and according to what I last heard is doing quite well. It sounds extremely promising. Wishing you the best of luck and I'll pray as I do for all the PALS and CALS .

 

[Gerri]

Prayers for your trip and your research study to be successful! Exciting! Keep us posted!

 

[AfraidButNotAlone]

Thank you, everyone, for your support and prayers

 

[LinCan]

Hi. Just wanted to wish you the very best results possible for this trial. Apparently Two sites in Mass. Are hoping to start trials in 2014. I wonder if they allow out-of-country participants. I hope they are approved, either way. Things are starting to happen!
Let us know how things are progressing.
Linda

 

[FightingAttorney10]

Good luck, but in my opinion stem cells are not the answer for this disease, I hope your included into the trial though!

 

[milanumpa]

Thank you! My husband is Iranian we will look into it!