K
Keepercjr
Guest
Here is some info on the 2 other CF groups that I belong to:
First is a listserve called Cystic-L. You get the messages via email instead of a forum like this one. I've been a member since 1996 or so. If you want more info let me (or Leah or Anne) know.
Here is the website w/ info on how to join, etc:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cystic-l.org/
">http://www.cystic-l.org/
</a>
Here is the group info:
"CYSTIC-L is a free email service dedicated to the exchange of information and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been sharing both casual banter about the varied impact that CF has on our lives, as well as technical and medical information exchanges that help us to overcome the more unpleasant factors that this silly little gene imposes upon us. There are over 600 list subscribers sending a total of around 20-60 messages per day; a digest option is available which compiles messages and distributes them periodically during the day. Members include people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends and significant others."
There is also a yahoo group called "CFNutrition". I've been on the CFNutrition group for about 1-2 years now and I've found it very helpful. I believe it has about 250 members. It was started by a woman who's son is (now) in his late 20s and has CF (and doing very well). She's done a lot of research on nutrition and minerals, specifically magnesium. I consider her an invaluable resource when it comes to stuff that our doctors and registered dietitians aren't trained in. Here is the description from the home page:
<a target=_blank class=ftalternatingbarlinklarge href="http://health.groups.yahoo.com/group/CFNutrition/
">http://health.groups.yahoo.com/group/CFNutrition/
</a>
"Purpose: to disseminate information about vitamin and mineral deficiencies to those interested in taking a more active role in their health.
Mission: to share information, research and experiences with but not limited to: vitamins, minerals, amino acids, foods, herbs, food toxins, food allergies and intolerances; the practical use of essential oils, and offer support as we learn to take a more active role in our health and the health of our loved ones.
The focus is primarily on cystic fibrosis but anyone that finds the information helpful is welcome. Please, no flaming, spamming or blatant commercial advertising."
First is a listserve called Cystic-L. You get the messages via email instead of a forum like this one. I've been a member since 1996 or so. If you want more info let me (or Leah or Anne) know.
Here is the website w/ info on how to join, etc:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cystic-l.org/
">http://www.cystic-l.org/
</a>
Here is the group info:
"CYSTIC-L is a free email service dedicated to the exchange of information and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been sharing both casual banter about the varied impact that CF has on our lives, as well as technical and medical information exchanges that help us to overcome the more unpleasant factors that this silly little gene imposes upon us. There are over 600 list subscribers sending a total of around 20-60 messages per day; a digest option is available which compiles messages and distributes them periodically during the day. Members include people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends and significant others."
There is also a yahoo group called "CFNutrition". I've been on the CFNutrition group for about 1-2 years now and I've found it very helpful. I believe it has about 250 members. It was started by a woman who's son is (now) in his late 20s and has CF (and doing very well). She's done a lot of research on nutrition and minerals, specifically magnesium. I consider her an invaluable resource when it comes to stuff that our doctors and registered dietitians aren't trained in. Here is the description from the home page:
<a target=_blank class=ftalternatingbarlinklarge href="http://health.groups.yahoo.com/group/CFNutrition/
">http://health.groups.yahoo.com/group/CFNutrition/
</a>
"Purpose: to disseminate information about vitamin and mineral deficiencies to those interested in taking a more active role in their health.
Mission: to share information, research and experiences with but not limited to: vitamins, minerals, amino acids, foods, herbs, food toxins, food allergies and intolerances; the practical use of essential oils, and offer support as we learn to take a more active role in our health and the health of our loved ones.
The focus is primarily on cystic fibrosis but anyone that finds the information helpful is welcome. Please, no flaming, spamming or blatant commercial advertising."