support groups/ advisory boards

mommy2diego · Sep 15, 2009

I was wondering if any of you have organized a support group or advisory board for your cf clinic? I have been talking to our social worker lately about getting a group together and she wrote 2 sentences in a newsletter asking if anyone was interested and didn't get too much response.
I think with proper advertisement it would get a better response.

Another mom and I want to start one... maybe to meet once a month( parents of children/teens with cf.... no kids would come of course). thought we could meet for support, and maybe come up with some ideas to improve clinic...We also thought it would be neat to put together a voluntary directory where people could leave email addresses, or what social networks they belong to. This forum is great, but sometimes it would be nice to talk to some people that deal with the same docs etc.

Just wondering if anyone has done this, and if so how has it been?

mommy2diego · Sep 15, 2009

I was wondering if any of you have organized a support group or advisory board for your cf clinic? I have been talking to our social worker lately about getting a group together and she wrote 2 sentences in a newsletter asking if anyone was interested and didn't get too much response.
I think with proper advertisement it would get a better response.

Another mom and I want to start one... maybe to meet once a month( parents of children/teens with cf.... no kids would come of course). thought we could meet for support, and maybe come up with some ideas to improve clinic...We also thought it would be neat to put together a voluntary directory where people could leave email addresses, or what social networks they belong to. This forum is great, but sometimes it would be nice to talk to some people that deal with the same docs etc.

Just wondering if anyone has done this, and if so how has it been?

mommy2diego · Sep 15, 2009

I was wondering if any of you have organized a support group or advisory board for your cf clinic? I have been talking to our social worker lately about getting a group together and she wrote 2 sentences in a newsletter asking if anyone was interested and didn't get too much response.
I think with proper advertisement it would get a better response.

Another mom and I want to start one... maybe to meet once a month( parents of children/teens with cf.... no kids would come of course). thought we could meet for support, and maybe come up with some ideas to improve clinic...We also thought it would be neat to put together a voluntary directory where people could leave email addresses, or what social networks they belong to. This forum is great, but sometimes it would be nice to talk to some people that deal with the same docs etc.

Just wondering if anyone has done this, and if so how has it been?

mommy2diego · Sep 15, 2009

I was wondering if any of you have organized a support group or advisory board for your cf clinic? I have been talking to our social worker lately about getting a group together and she wrote 2 sentences in a newsletter asking if anyone was interested and didn't get too much response.
I think with proper advertisement it would get a better response.

Another mom and I want to start one... maybe to meet once a month( parents of children/teens with cf.... no kids would come of course). thought we could meet for support, and maybe come up with some ideas to improve clinic...We also thought it would be neat to put together a voluntary directory where people could leave email addresses, or what social networks they belong to. This forum is great, but sometimes it would be nice to talk to some people that deal with the same docs etc.

Just wondering if anyone has done this, and if so how has it been?

mommy2diego · Sep 15, 2009

I was wondering if any of you have organized a support group or advisory board for your cf clinic? I have been talking to our social worker lately about getting a group together and she wrote 2 sentences in a newsletter asking if anyone was interested and didn't get too much response.
 I think with proper advertisement it would get a better response.
 
 Another mom and I want to start one... maybe to meet once a month( parents of children/teens with cf.... no kids would come of course). thought we could meet for support, and maybe come up with some ideas to improve clinic...We also thought it would be neat to put together a voluntary directory where people could leave email addresses, or what social networks they belong to. This forum is great, but sometimes it would be nice to talk to some people that deal with the same docs etc.
 
 Just wondering if anyone has done this, and if so how has it been?

hmw · Sep 15, 2009

There is an advisory board at our clinic that meets once a month. They do discuss ideas on improving the care at the clinic, fundraisers, etc and as you said, *NO* kids attend. I am not sure if any adults w/ CF attend; the person I spoke to about it that runs it works at our ped clinic.

I am interested in learning more about it but haven't yet attended a meeting; it's a long drive at a bad time for me to get away.

I agree that having a chance for more contact with other local families would be very nice and coming up with a way to compile a 'directory' of email addresses or whatever for those open to the idea is a good idea. <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF is such an isolating disease w/ in-person contact being so limited (at least of course until our kids are older and can make their own choices on the matter (and can do so without slobbering and coughing on each other like they do as toddlers haha.)

hmw · Sep 15, 2009

There is an advisory board at our clinic that meets once a month. They do discuss ideas on improving the care at the clinic, fundraisers, etc and as you said, *NO* kids attend. I am not sure if any adults w/ CF attend; the person I spoke to about it that runs it works at our ped clinic.

I am interested in learning more about it but haven't yet attended a meeting; it's a long drive at a bad time for me to get away.

I agree that having a chance for more contact with other local families would be very nice and coming up with a way to compile a 'directory' of email addresses or whatever for those open to the idea is a good idea. <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF is such an isolating disease w/ in-person contact being so limited (at least of course until our kids are older and can make their own choices on the matter (and can do so without slobbering and coughing on each other like they do as toddlers haha.)

hmw · Sep 15, 2009

There is an advisory board at our clinic that meets once a month. They do discuss ideas on improving the care at the clinic, fundraisers, etc and as you said, *NO* kids attend. I am not sure if any adults w/ CF attend; the person I spoke to about it that runs it works at our ped clinic.

I am interested in learning more about it but haven't yet attended a meeting; it's a long drive at a bad time for me to get away.

I agree that having a chance for more contact with other local families would be very nice and coming up with a way to compile a 'directory' of email addresses or whatever for those open to the idea is a good idea. <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF is such an isolating disease w/ in-person contact being so limited (at least of course until our kids are older and can make their own choices on the matter (and can do so without slobbering and coughing on each other like they do as toddlers haha.)

hmw · Sep 15, 2009

There is an advisory board at our clinic that meets once a month. They do discuss ideas on improving the care at the clinic, fundraisers, etc and as you said, *NO* kids attend. I am not sure if any adults w/ CF attend; the person I spoke to about it that runs it works at our ped clinic.

I am interested in learning more about it but haven't yet attended a meeting; it's a long drive at a bad time for me to get away.

I agree that having a chance for more contact with other local families would be very nice and coming up with a way to compile a 'directory' of email addresses or whatever for those open to the idea is a good idea. <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF is such an isolating disease w/ in-person contact being so limited (at least of course until our kids are older and can make their own choices on the matter (and can do so without slobbering and coughing on each other like they do as toddlers haha.)

hmw · Sep 15, 2009

There is an advisory board at our clinic that meets once a month. They do discuss ideas on improving the care at the clinic, fundraisers, etc and as you said, *NO* kids attend. I am not sure if any adults w/ CF attend; the person I spoke to about it that runs it works at our ped clinic.
 
 I am interested in learning more about it but haven't yet attended a meeting; it's a long drive at a bad time for me to get away.
 
 I agree that having a chance for more contact with other local families would be very nice and coming up with a way to compile a 'directory' of email addresses or whatever for those open to the idea is a good idea. <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF is such an isolating disease w/ in-person contact being so limited (at least of course until our kids are older and can make their own choices on the matter (and can do so without slobbering and coughing on each other like they do as toddlers haha.)

Mommafirst · Sep 15, 2009

I am on our clinic's family council. Parents of CF kids as well as a few CF adult patients go (they stay seperate and are very mindful of germs). Every month a pharmaceutical or other type of rep donates dinner and we meet with the social worker, usually one ped doctor and one adult doctor and a CF nurse to discuss issues that make the center a better place. This group has been a blessing for me. Its gotten me more involved and I've met some wonderfully amazing people. I didn't have anything to do with starting it, but would highly suggest your Center doing something like this. It benefits everyone!!!

Mommafirst · Sep 15, 2009

I am on our clinic's family council. Parents of CF kids as well as a few CF adult patients go (they stay seperate and are very mindful of germs). Every month a pharmaceutical or other type of rep donates dinner and we meet with the social worker, usually one ped doctor and one adult doctor and a CF nurse to discuss issues that make the center a better place. This group has been a blessing for me. Its gotten me more involved and I've met some wonderfully amazing people. I didn't have anything to do with starting it, but would highly suggest your Center doing something like this. It benefits everyone!!!

Mommafirst · Sep 15, 2009

I am on our clinic's family council. Parents of CF kids as well as a few CF adult patients go (they stay seperate and are very mindful of germs). Every month a pharmaceutical or other type of rep donates dinner and we meet with the social worker, usually one ped doctor and one adult doctor and a CF nurse to discuss issues that make the center a better place. This group has been a blessing for me. Its gotten me more involved and I've met some wonderfully amazing people. I didn't have anything to do with starting it, but would highly suggest your Center doing something like this. It benefits everyone!!!

Mommafirst · Sep 15, 2009

I am on our clinic's family council. Parents of CF kids as well as a few CF adult patients go (they stay seperate and are very mindful of germs). Every month a pharmaceutical or other type of rep donates dinner and we meet with the social worker, usually one ped doctor and one adult doctor and a CF nurse to discuss issues that make the center a better place. This group has been a blessing for me. Its gotten me more involved and I've met some wonderfully amazing people. I didn't have anything to do with starting it, but would highly suggest your Center doing something like this. It benefits everyone!!!

Mommafirst · Sep 15, 2009

I am on our clinic's family council. Parents of CF kids as well as a few CF adult patients go (they stay seperate and are very mindful of germs). Every month a pharmaceutical or other type of rep donates dinner and we meet with the social worker, usually one ped doctor and one adult doctor and a CF nurse to discuss issues that make the center a better place. This group has been a blessing for me. Its gotten me more involved and I've met some wonderfully amazing people. I didn't have anything to do with starting it, but would highly suggest your Center doing something like this. It benefits everyone!!!

mjbarnes · Sep 19, 2009