Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I went to that page & although I am already in Yahoo, it didn't want to verify my code. It is right & the only one I have ever used so I wouldn't FORGET it. so I followed all directions & still couldn't get in .. It appears only one member is there, I assume that is you . So, how to isn't getting thru to me .Sorry . LOVE & HUGS, grandmoMBEv Summary of Board As I mentioned before, I am a new member here. I have started going through the messages since beginning 2002 and noticed that some posts are quite informative while others no so much. I have a recommendation to make. To create another message board just to put in/transfer the very informative posts. This will significantly facilitate the exchange of info between us. It will help newbies and getting the most important knowledge quickly and will help current members in not having to keep responding to the same questions over and over. This advice is not coming from laziness on my part. As I mentioned before, I am the founder and manager of a tropical fish club with over 1,700 members and have done that for my members. The main club is called Betta Splendens and I also created several other " satellite " clubs names Betta Genetic Archives, Betta Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among others. I thought of starting my own Back Up CF club for private use only, but am thinking that this club could benefit from such a site. The purpose of the club is not chat but just to transfer the informative posts. The one I created is http://health.groups.yahoo.com/group/cfbackup/ ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 , It's a great Idea, but there are already 45 CF boards on Yahoo, not to mention the MSN board, and Cystic-l on list serve. This group has the most members on Yahoo and is focused on CF parents. Cystic-l has a web site that has boiled down a lot of the questions asked, but it sometimes has outdated material, the practice and care of CF changes even in the 21 months my wife and I have been CFParents. I just filter out all the " that's so nice " posts, the father/husband bashing, and the completey off topic post. There are several people who normally have good questions or information to exchange, so I pay attention to any thread they are participating. I would like to be able to download all of the old Post so I could use a better search tool then the one provide by yahoo. But there is only so much time in the day. _____ From: Sent: Wednesday, November 12, 2003 8:18 AM To: cfparents Subject: Summary of Board As I mentioned before, I am a new member here. I have started going through the messages since beginning 2002 and noticed that some posts are quite informative while others no so much. I have a recommendation to make. To create another message board just to put in/transfer the very informative posts. This will significantly facilitate the exchange of info between us. It will help newbies and getting the most important knowledge quickly and will help current members in not having to keep responding to the same questions over and over. This advice is not coming from laziness on my part. As I mentioned before, I am the founder and manager of a tropical fish club with over 1,700 members and have done that for my members. The main club is called Betta Splendens and I also created several other " satellite " clubs names Betta Genetic Archives, Betta Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among others. I thought of starting my own Back Up CF club for private use only, but am thinking that this club could benefit from such a site. The purpose of the club is not chat but just to transfer the informative posts. The one I created is http://health.groups.yahoo.com/group/cfbackup/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Guess what -It finally worked . I just couldn't get the info on the second age, But that is o.k. thanks , GRDMBEV Summary of Board As I mentioned before, I am a new member here. I have started going through the messages since beginning 2002 and noticed that some posts are quite informative while others no so much. I have a recommendation to make. To create another message board just to put in/transfer the very informative posts. This will significantly facilitate the exchange of info between us. It will help newbies and getting the most important knowledge quickly and will help current members in not having to keep responding to the same questions over and over. This advice is not coming from laziness on my part. As I mentioned before, I am the founder and manager of a tropical fish club with over 1,700 members and have done that for my members. The main club is called Betta Splendens and I also created several other " satellite " clubs names Betta Genetic Archives, Betta Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among others. I thought of starting my own Back Up CF club for private use only, but am thinking that this club could benefit from such a site. The purpose of the club is not chat but just to transfer the informative posts. The one I created is http://health.groups.yahoo.com/group/cfbackup/ ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 My site doesn't have to be the one that is chosen for putting the back up. If the founder/manager of this site sets another one up and people help out, I will be very happy. The goal is to organize the information in a way to benefit everyone. The fact that there are 45 other groups out there is ok, as long as we know where to go to get the info. " Cystic-l has a web site that has boiled down a lot of the questions asked... " How do I get to this Cystic-1 site? I am surprised that we don't have a links section here...I would like to know some other recommended sites... Changing topics, my son went through a surgery on Monday to close the " ostomy " and is doing well. They didn't have to cut intestine out. He's now wide awake. If everything goes well, he could be coming home in 3 weeks. I can't wait to see him out of the wires and with us 24 hours/day... Regards to all, > , > > It's a great Idea, but there are already 45 CF boards on Yahoo, not to > mention the MSN board, and Cystic-l on list serve. This group has the most > members on Yahoo and is focused on CF parents. Cystic-l has a web site that > has boiled down a lot of the questions asked, but it sometimes has outdated > material, the practice and care of CF changes even in the 21 months my wife > and I have been CFParents. > > I just filter out all the " that's so nice " posts, the father/husband > bashing, and the completey off topic post. There are several people who > normally have good questions or information to exchange, so I pay attention > to any thread they are participating. > > I would like to be able to download all of the old Post so I could use a > better search tool then the one provide by yahoo. But there is only so much > time in the day. > > > > > > _____ > > From: [mailto:vze238yx@v...] > Sent: Wednesday, November 12, 2003 8:18 AM > To: cfparents > Subject: Summary of Board > > As I mentioned before, I am a new member here. I have started going > through the messages since beginning 2002 and noticed that some > posts are quite informative while others no so much. > > I have a recommendation to make. > > To create another message board just to put in/transfer the very > informative posts. This will significantly facilitate the exchange > of info between us. It will help newbies and getting the most > important knowledge quickly and will help current members in not > having to keep responding to the same questions over and over. > > This advice is not coming from laziness on my part. As I mentioned > before, I am the founder and manager of a tropical fish club with > over 1,700 members and have done that for my members. The main club > is called Betta Splendens and I also created several > other " satellite " clubs names Betta Genetic Archives, Betta > Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among > others. > > I thought of starting my own Back Up CF club for private use only, > but am thinking that this club could benefit from such a site. The > purpose of the club is not chat but just to transfer the informative > posts. The one I created is > http://health.groups.yahoo.com/group/cfbackup/ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Hi , I am pleased you are trying to locate all the information that is available. Another site you will enjoy is cysticfibrosis@... Put that in your search box & you will get to sign up page. It is truly a delightful & informative group as well. Most folks are on as many as they can be , so you hear from many of us all on each. The best to your wee one with the surgery recovery too. He will be happy to be home (you will too-hehe) Take care, LOVE & HUGS, grandmoMBEV Summary of Board > > As I mentioned before, I am a new member here. I have started going > through the messages since beginning 2002 and noticed that some > posts are quite informative while others no so much. > > I have a recommendation to make. > > To create another message board just to put in/transfer the very > informative posts. This will significantly facilitate the exchange > of info between us. It will help newbies and getting the most > important knowledge quickly and will help current members in not > having to keep responding to the same questions over and over. > > This advice is not coming from laziness on my part. As I mentioned > before, I am the founder and manager of a tropical fish club with > over 1,700 members and have done that for my members. The main club > is called Betta Splendens and I also created several > other " satellite " clubs names Betta Genetic Archives, Betta > Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among > others. > > I thought of starting my own Back Up CF club for private use only, > but am thinking that this club could benefit from such a site. The > purpose of the club is not chat but just to transfer the informative > posts. The one I created is > http://health.groups.yahoo.com/group/cfbackup/ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 > > To create another message board just to put in/transfer the very > informative posts. This will significantly facilitate the exchange > of info between us. It will help newbies and getting the most > important knowledge quickly and will help current members in not > having to keep responding to the same questions over and over. Who decides which post is informative and fatual enough to keep? jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 , When Zach was first diagnosed I found a lot of useful information at this website: http://personal.nbnet.nb.ca/normap/CF.htm I also think the Orenstein book is very helpful to the newly diagnosed. The newest edition is available at Amazon.com. I couldn't wait to get Zach out of the NICU either. He had a meconium ileus but only needed enemas to clear it. I hated waiting to get permission to hold him each day and then trying to navigate all of the wires, etc. I know they were all totally necessary, but as a new mom it was really hard to accept. I kept telling myself that as soon as I got him home I was going to hold him for one hour straight and no one could take him from me. I held him for that hour and a lot more. I hope your baby is home soon! Sara > > , > > > > It's a great Idea, but there are already 45 CF boards on Yahoo, > not to > > mention the MSN board, and Cystic-l on list serve. This group has > the most > > members on Yahoo and is focused on CF parents. Cystic-l has a web > site that > > has boiled down a lot of the questions asked, but it sometimes has > outdated > > material, the practice and care of CF changes even in the 21 > months my wife > > and I have been CFParents. > > > > I just filter out all the " that's so nice " posts, the > father/husband > > bashing, and the completey off topic post. There are several > people who > > normally have good questions or information to exchange, so I pay > attention > > to any thread they are participating. > > > > I would like to be able to download all of the old Post so I could > use a > > better search tool then the one provide by yahoo. But there is > only so much > > time in the day. > > > > > > > > > > > > _____ > > > > From: [mailto:vze238yx@v...] > > Sent: Wednesday, November 12, 2003 8:18 AM > > To: cfparents > > Subject: Summary of Board > > > > As I mentioned before, I am a new member here. I have started > going > > through the messages since beginning 2002 and noticed that some > > posts are quite informative while others no so much. > > > > I have a recommendation to make. > > > > To create another message board just to put in/transfer the very > > informative posts. This will significantly facilitate the > exchange > > of info between us. It will help newbies and getting the most > > important knowledge quickly and will help current members in not > > having to keep responding to the same questions over and over. > > > > This advice is not coming from laziness on my part. As I > mentioned > > before, I am the founder and manager of a tropical fish club with > > over 1,700 members and have done that for my members. The main > club > > is called Betta Splendens and I also created several > > other " satellite " clubs names Betta Genetic Archives, Betta > > Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among > > others. > > > > I thought of starting my own Back Up CF club for private use only, > > but am thinking that this club could benefit from such a site. > The > > purpose of the club is not chat but just to transfer the > informative > > posts. The one I created is > > http://health.groups.yahoo.com/group/cfbackup/ > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Hi, it's always appreciated when people make suggestions to improve the list. I have absolutely reached the limit for time spent at the computer, but have a long wish list for things I would like to see improved. 1.) The Yahoo search engine is very poor. So if there is the possibility to link all posts (or only the informative ones if you think you have the perfect judgement) to a better search engine, that would be great. I think sharktank has done that with their list but I don't know how they did it. 2.) I have deactivated the links section because spammers post their links to porn sites there, I can't figure out how I can moderate those posted links and I don't have the time to check the links section several times a day. 3.)For similar reasons has deactivated the Calendar function because it was misused all the time. 4.) There are lists where you are not allowed to post off-topic messages and there are constant debates about what is off-topic and what not. CFparents is the biggest and fastest growing CF list, therefore I assume that there is demand for this type of list. It is a lifeline for many and sometimes the off-topic banter is as important for us as the information is for our kids. 5.) Cystic-L (www.cystic-L.org) has the best search engine and it is recommended to subscribe to that list to have access to their archive. But since research is moving on fast be careful with old messages. The content may be outdated. Peace Torsten, dad of Fiona 6wcf and Sebastian 6months wocf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 YES, it is most likely the biggest & most updated reference /link list there is . Norma has CF herself & does soooooo much for us all!! LOVE & HUGS, GRDMBEV Summary of Board > > > > As I mentioned before, I am a new member here. I have started > going > > through the messages since beginning 2002 and noticed that some > > posts are quite informative while others no so much. > > > > I have a recommendation to make. > > > > To create another message board just to put in/transfer the very > > informative posts. This will significantly facilitate the > exchange > > of info between us. It will help newbies and getting the most > > important knowledge quickly and will help current members in not > > having to keep responding to the same questions over and over. > > > > This advice is not coming from laziness on my part. As I > mentioned > > before, I am the founder and manager of a tropical fish club with > > over 1,700 members and have done that for my members. The main > club > > is called Betta Splendens and I also created several > > other " satellite " clubs names Betta Genetic Archives, Betta > > Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among > > others. > > > > I thought of starting my own Back Up CF club for private use only, > > but am thinking that this club could benefit from such a site. > The > > purpose of the club is not chat but just to transfer the > informative > > posts. The one I created is > > http://health.groups.yahoo.com/group/cfbackup/ > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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