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Thanks! Don't know why they didn't mention this to my husband when we went several weeks ago. He spoke with the head research nurse.

I sent her an email this evening to see if he would qualify, based on the criteria.
 
Hello PALS,
I saw a scarey 60 Minutes Program about how 2 ALS folks were scammed out of their life's savings by going to get stem cells injected into their spines. Do we know this place in Emory is oK? Sure looks great on their Web site. My sister lives in GA, and maybe I might qualify for this research. So far I only have a foot drop and alittle weakness in the other leg, but with a POA I walk great. Today in fact I did the "Walk a Mile in My Shoes" for the Poor. I did 3 miles, using my hiking cane on the last one. I kept a close watch for fatigue, not to push myself. It was a great experience. I gave thanks to God for being able to walk, to use the muscles still. I have been trying to create a "memory bank" of walks, so that when I can no longer walk, I will have these to treasure. I desire to praise God for movement, but as movement goes away, I want to sort of give it back to my Creator, with a grateful heart. I know that will be a piece of work, with sweat and tears, so pray pray for me for this great grace.
Any ideas about this reseach, let me know.
Love to all my PALS,
Seqouia
 
This is legit! But, you have to be willing to be a lab rat.

This is not a "treatment," touted like countries outside the US. This a trial to see if the cells will work. There is no guarantee.

Phase I was for safety, so as you can see they have to go through the FDA. There will be a risk, that's why it's a trial to see if it works.

Edit- to clarify, they are still in a Phase I safety trial. They are going forward with "group B."
 
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Thanks brooksea, I'm not sure if I'm up for "risks" right now, but I will pray about it. If I did qualify, I would do it for others, to see if it is a breakthru for a cure or slow down for ALS. That would muster up my courageous!
Love and prayers,
Seqouia
 
I am in the process of trying to qualify for this treatment with Emory. The key to understand is that right now what this trial is testing is the safety of the procedure. So far they have done it on 100 pigs and 5 people. Technically they are not allowed to talk about the impact of the stem cells yet because it is a safety research trial. While the stem cells did help mice, as Dr Glass said, we are not mice. They are currently evaluating 3 people for the next 3 spots. I am hoping and praying that I will be able to qualify.
 
Ted,
Sure hope you get one of the spots. I am so grateful for those taking the leap for the team. Read a lot about the trial, sending great thoughts your way...
 
Thank You H4C. By the way were in Pa are you located? My wife and I grew up in Lancaster.
 
Good luck, Ted!

My husband got his hopes up, but as he read through the information about the trial, he decided the risks were too great for his particular life situation. He still wants to be able to enjoy his time with our son and feels the trial might jeopardize that.
 
Thanks CJ. Having 3 young children myself I certainly understand your husbands sentiments. Those feelings certainly weigh heavily on my mind as well. For me it is the sense that I will be trying to do something to fight this "unbeatable" disease. I know the odds are not in my favor even if I do qualify for the trial but as I have said before even if in the end it does not help me maybe it help them learn how to help others!
 
Well, good luck to you!


Thank you for volunteering! You are very,very brave! Good luck to you and your family!
 
Ted,
I'm praying you will be chosen for the trial. I'll have my 93 yr old mom,Mary, pray a rosary for you,
she does 5 a day and has great faith, she is strong and healthy and with my husband Fred is my CALS.
Pat
 
Pat, thank you so much. That means more to me then I can say. I appreciate yours and your Mom's prayers.

Stay strong and keep the faith - Ted
 
I've been looking for details about how the first subjects of the transplant are feeling/doing, but can't find any. In the CNN report one of the patients said he was feeling a bit better but it was too early to say. I was hoping they'd be members here or posting online about it -- but maybe they are not allowed to. Anyone know anything on this?

Thanks!
 
All I know is what you saw on CNN and what they told me at Emory which is that they are all doing well and survived the procedure with "no unexpected side effects." They said no one miracously got up and started walking (keep in mind the first patients were farther progressed then the next round requirements) but remember they are not really allowed to talk yet about theimpact of the stem cells because this study is about the studying the safety of the procedure of having the stem cells injected into your spine which is quite an invasive procedure.
 
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