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denufusol trial...not gene specific?
- Thread starter dramamama
- Start date
Well everybody except those of us with Cepacia as usual, we are excluded from the trials, as we constantly are. Those of us with BC are the three headed, one eyed, hairy green monsters of the CF world who have been shoved into a corner while they wait for us to die. Just once i'd like to see them bring out a drug specifically for us cepacia monsters, or at the very least enable us to be included in a trial. Makes me frikkin mad!! *coughs a big green cepacia filled lung oyster in the face of the research scientist* just kidding, they love us really <img src="i/expressions/face-icon-small-happy.gif" border="0">
Well everybody except those of us with Cepacia as usual, we are excluded from the trials, as we constantly are. Those of us with BC are the three headed, one eyed, hairy green monsters of the CF world who have been shoved into a corner while they wait for us to die. Just once i'd like to see them bring out a drug specifically for us cepacia monsters, or at the very least enable us to be included in a trial. Makes me frikkin mad!! *coughs a big green cepacia filled lung oyster in the face of the research scientist* just kidding, they love us really <img src="i/expressions/face-icon-small-happy.gif" border="0">
Well everybody except those of us with Cepacia as usual, we are excluded from the trials, as we constantly are. Those of us with BC are the three headed, one eyed, hairy green monsters of the CF world who have been shoved into a corner while they wait for us to die. Just once i'd like to see them bring out a drug specifically for us cepacia monsters, or at the very least enable us to be included in a trial. Makes me frikkin mad!! *coughs a big green cepacia filled lung oyster in the face of the research scientist* just kidding, they love us really <img src="i/expressions/face-icon-small-happy.gif" border="0">
princessjdc
New member
Well, I now look forward to trying two drugs that are in the making. PTC124 which is now in trial 2, and according to Chantel, PTC has 5 more years before its out, I really hope its sooner though and the other drug is Denufosol. I love hearing hearing great things like this and how new drugs are working.
princessjdc
New member
Well, I now look forward to trying two drugs that are in the making. PTC124 which is now in trial 2, and according to Chantel, PTC has 5 more years before its out, I really hope its sooner though and the other drug is Denufosol. I love hearing hearing great things like this and how new drugs are working.
princessjdc
New member
Well, I now look forward to trying two drugs that are in the making. PTC124 which is now in trial 2, and according to Chantel, PTC has 5 more years before its out, I really hope its sooner though and the other drug is Denufosol. I love hearing hearing great things like this and how new drugs are working.
hopefullmom
New member
Hello , I am trying to follow ptc124 as close as I can my little girl has one of the X mutations, I have talked with doctors in Alabama and Jeruselem, and the drug is very promising - they will soon start trials on ages 5 and up. Just thought I would let you know a little of what I have found out. What is ages is the defusonal for ? My little girl just cultured pseado for the first time will they still let people in on trials after that has been cultured. Thank, Christa mom of MACI 4 wcf, Whitney 16 wocf, Blake 9wocf.
hopefullmom
New member
Hello , I am trying to follow ptc124 as close as I can my little girl has one of the X mutations, I have talked with doctors in Alabama and Jeruselem, and the drug is very promising - they will soon start trials on ages 5 and up. Just thought I would let you know a little of what I have found out. What is ages is the defusonal for ? My little girl just cultured pseado for the first time will they still let people in on trials after that has been cultured. Thank, Christa mom of MACI 4 wcf, Whitney 16 wocf, Blake 9wocf.
hopefullmom
New member
Hello , I am trying to follow ptc124 as close as I can my little girl has one of the X mutations, I have talked with doctors in Alabama and Jeruselem, and the drug is very promising - they will soon start trials on ages 5 and up. Just thought I would let you know a little of what I have found out. What is ages is the defusonal for ? My little girl just cultured pseado for the first time will they still let people in on trials after that has been cultured. Thank, Christa mom of MACI 4 wcf, Whitney 16 wocf, Blake 9wocf.