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Thank you Deb and Ladyinn - my apologies for taking so long to respond - having my little girl outside of her mom has made life much more hectic! We did bank her cord blood and cord tissue, and the doctor said he was able to get a significant amount. With the developments going on down at Emory...

Hi everyone - it's been a while since I've posted, but I'm in the same boat as the pals/caregivers on this thread, so I figured I'd give an update. I started the Dex trial at Columbia in NYC last August, and began getting the "real thing" in October. I have a feeling that I've been on the real...

Thanks so much everyone. It really is such a bizarre situation - we had been trying for over a year, finally got the good news, and then got my bad news. I've accepted that I've got this disease and that things are going to change, but as of now things really haven't. The day after my diagnosis...

Hi - I noticed your photos from the walk across the hudson - are you local to NY/CT? I live in Stamford. I haven't been really involved with events since my diagnosis, but definitely want to. Any suggestions?

Just a quick question for you all - I was diagnosed in June, and obviously it's been hard on everyone close to me. My question (and I guess it's mainly directly to the women out there, though anyone fee free to chime in) is what I can do to try and ease the stress/burden for my wife, who's 7...

Hi everyone - I've been absent for a bit but I wanted to check in with a quick update. I'm about three and a half months into the trial now, and I honestly have no idea if I'm on the drug or the placebo. I got into the trial about 2 months after I was diagnosed, and with a slow progression to...

One of the questions asked at all the dex visits had been if I've had an increase in saliva production (didn't at first, but over the past three weeks I have). Is this a drug side effect? Has anyone else experienced this?

GP - it's great to hear how positive you're staying through all this. The disease can definitely take a toll on the patient and on the family, and it sounds like you guys are making the most of a situation none of us deserve to be in. I'm focusing on the positive too - I'm in the dex trial, the...

I've been in the trial for a month now and I'm finding that it's not worth the aggravation trying to figure out if it's the real thing or the placebo... My progression has been really slow to begin with, so I really can't tell if it's doing anything anyway. The one thing that I've noticed is...

Fingers crossed for you, KissJ! I'm going in for my 2 week checkup tomorrow, and all I've noticed so far are the headaches (I NEVER got headaches before) and sort of lump/frog in my throat. I'm sleeping fine and do have some joint soreness, but nothing really notable.