Search results

A big thanks to all of you for the great ideas! After the first of the year I want to get started and I plan to use some of your suggestions. Good luck to all of you too!

A big thanks to all of you for the great ideas! After the first of the year I want to get started and I plan to use some of your suggestions. Good luck to all of you too!

A big thanks to all of you for the great ideas! After the first of the year I want to get started and I plan to use some of your suggestions. Good luck to all of you too!

Thank you for your responses and suggestions! We have also been very involved with our local CF chapter and have got some good ideas from them. Last year we only used email letter writing to raise funds. We raised a little over $4,000 in a month just doing that! We are currently working on...

Thank you for your responses and suggestions! We have also been very involved with our local CF chapter and have got some good ideas from them. Last year we only used email letter writing to raise funds. We raised a little over $4,000 in a month just doing that! We are currently working on...

Thank you for your responses and suggestions! We have also been very involved with our local CF chapter and have got some good ideas from them. Last year we only used email letter writing to raise funds. We raised a little over $4,000 in a month just doing that! We are currently working on...

Hi everyone. This will be our second year raising money for CFF. Our son, with CF, is only 9 months old so we are pretty new to all of this. We did participate in the 2006 Great Strides walk, but since he was diagnosed in March and the event took place in May we had little time to raise money...

Hi everyone. This will be our second year raising money for CFF. Our son, with CF, is only 9 months old so we are pretty new to all of this. We did participate in the 2006 Great Strides walk, but since he was diagnosed in March and the event took place in May we had little time to raise money...

Hi everyone. This will be our second year raising money for CFF. Our son, with CF, is only 9 months old so we are pretty new to all of this. We did participate in the 2006 Great Strides walk, but since he was diagnosed in March and the event took place in May we had little time to raise money...

Heather, Please see my post in a <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=14238&enterthread=y">similar thread</a>. Our OBs and perinatologists said the same thing about how we didn't need to worry about one of our...

Heather, Please see my post in a <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=14238&enterthread=y">similar thread</a>. Our OBs and perinatologists said the same thing about how we didn't need to worry about one of our...

Heather, Please see my post in a <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=14238&enterthread=y">similar thread</a>. Our OBs and perinatologists said the same thing about how we didn't need to worry about one of our...

Pregnant - was also posted in "Newly Diagnosed Shannon, Around one year ago we were in a similar situation. My husband and I didn't know what CF was, we hadn't done any genetic screening (turns out this wouldn't have caught Tyler's rare mutations anyways) and, obviously, had no family history...

Pregnant - was also posted in "Newly Diagnosed Shannon, Around one year ago we were in a similar situation. My husband and I didn't know what CF was, we hadn't done any genetic screening (turns out this wouldn't have caught Tyler's rare mutations anyways) and, obviously, had no family history...

Pregnant - was also posted in "Newly Diagnosed Shannon, Around one year ago we were in a similar situation. My husband and I didn't know what CF was, we hadn't done any genetic screening (turns out this wouldn't have caught Tyler's rare mutations anyways) and, obviously, had no family history...

Hi Amber. I don't do a lot of posting on the site, but do check in now and then. I was surprised to find that your son has Q493X. My son also has this mutation. From what I understand it is a very rare mutation. From what I have seen it looks like less than 0.1% have this specific mutation. I...

Hi Amber. I don't do a lot of posting on the site, but do check in now and then. I was surprised to find that your son has Q493X. My son also has this mutation. From what I understand it is a very rare mutation. From what I have seen it looks like less than 0.1% have this specific mutation. I...

Hi Amber. I don't do a lot of posting on the site, but do check in now and then. I was surprised to find that your son has Q493X. My son also has this mutation. From what I understand it is a very rare mutation. From what I have seen it looks like less than 0.1% have this specific mutation. I...

Does anyone know of someone who has the two mutations N1303K and Q493X. If so, I was wondering how this person is doing. I have found some information on N1303K, but very little information on Q493X. I'm not sure that it has even been classified yet. Any information would be helpful. Thanks.

Thanks for sharing your story with me. It helps me realize we are not alone. Tyler was also on TPNs for some time after surgery. They did mention that this could be the problem. They say at this point it is something to watch. How long did your some have elevated liver enzymes?