CF Parent Advocacy Group

F

flatfordl

New member
I recently became a member of a CF Parent Advocacy Group. The group was started through our local childrens hospital. The social worker we see at CF clinic asked me to join, because she thinks my husband and I are great role models for other families...if she only new!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0"> My first meeting is this Thursday. I am interested to see what the goals of the group are. I hope we can do great things, maybe then I won't feel guilty leaving my house without the kids. My husband is already heavily involved in the CF Foundation (member of the CF Board and Great Strides Chairperson). So, I hope I can do my part with this group.

My question is...are any of you members of a similar group? What do you all do? How long has the group been together? Do you have any (positive, helpful, happy )advice?

Thanks.
 
F

flatfordl

New member
I recently became a member of a CF Parent Advocacy Group. The group was started through our local childrens hospital. The social worker we see at CF clinic asked me to join, because she thinks my husband and I are great role models for other families...if she only new!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0"> My first meeting is this Thursday. I am interested to see what the goals of the group are. I hope we can do great things, maybe then I won't feel guilty leaving my house without the kids. My husband is already heavily involved in the CF Foundation (member of the CF Board and Great Strides Chairperson). So, I hope I can do my part with this group.

My question is...are any of you members of a similar group? What do you all do? How long has the group been together? Do you have any (positive, helpful, happy )advice?

Thanks.
 
F

flatfordl

New member
I recently became a member of a CF Parent Advocacy Group. The group was started through our local childrens hospital. The social worker we see at CF clinic asked me to join, because she thinks my husband and I are great role models for other families...if she only new!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0"> My first meeting is this Thursday. I am interested to see what the goals of the group are. I hope we can do great things, maybe then I won't feel guilty leaving my house without the kids. My husband is already heavily involved in the CF Foundation (member of the CF Board and Great Strides Chairperson). So, I hope I can do my part with this group.

My question is...are any of you members of a similar group? What do you all do? How long has the group been together? Do you have any (positive, helpful, happy )advice?

Thanks.
 
F

flatfordl

New member
I recently became a member of a CF Parent Advocacy Group. The group was started through our local childrens hospital. The social worker we see at CF clinic asked me to join, because she thinks my husband and I are great role models for other families...if she only new!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0"> My first meeting is this Thursday. I am interested to see what the goals of the group are. I hope we can do great things, maybe then I won't feel guilty leaving my house without the kids. My husband is already heavily involved in the CF Foundation (member of the CF Board and Great Strides Chairperson). So, I hope I can do my part with this group.

My question is...are any of you members of a similar group? What do you all do? How long has the group been together? Do you have any (positive, helpful, happy )advice?

Thanks.
 
F

flatfordl

New member
I recently became a member of a CF Parent Advocacy Group. The group was started through our local childrens hospital. The social worker we see at CF clinic asked me to join, because she thinks my husband and I are great role models for other families...if she only new!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0"> My first meeting is this Thursday. I am interested to see what the goals of the group are. I hope we can do great things, maybe then I won't feel guilty leaving my house without the kids. My husband is already heavily involved in the CF Foundation (member of the CF Board and Great Strides Chairperson). So, I hope I can do my part with this group.
<br />
<br />My question is...are any of you members of a similar group? What do you all do? How long has the group been together? Do you have any (positive, helpful, happy )advice?
<br />
<br />Thanks.
<br />
<br />
 
M

Mommafirst

Guest
My husband and I were asked to join the CF Family Council last year. We've really enjoyed going and have felt that we are making a great contribution. We have also developed a really nice relatioship with the center director (ped doc too) and adult program head. We've become mentors, been trained in HIPPA privacy, created education day, taken over the newletter, helped build an in-patient protocol process, the list goes on. I hope you will find it as fulfilling as I'm finding ours.
 
M

Mommafirst

Guest
My husband and I were asked to join the CF Family Council last year. We've really enjoyed going and have felt that we are making a great contribution. We have also developed a really nice relatioship with the center director (ped doc too) and adult program head. We've become mentors, been trained in HIPPA privacy, created education day, taken over the newletter, helped build an in-patient protocol process, the list goes on. I hope you will find it as fulfilling as I'm finding ours.
 
M

Mommafirst

Guest
My husband and I were asked to join the CF Family Council last year. We've really enjoyed going and have felt that we are making a great contribution. We have also developed a really nice relatioship with the center director (ped doc too) and adult program head. We've become mentors, been trained in HIPPA privacy, created education day, taken over the newletter, helped build an in-patient protocol process, the list goes on. I hope you will find it as fulfilling as I'm finding ours.
 
M

Mommafirst

Guest
My husband and I were asked to join the CF Family Council last year. We've really enjoyed going and have felt that we are making a great contribution. We have also developed a really nice relatioship with the center director (ped doc too) and adult program head. We've become mentors, been trained in HIPPA privacy, created education day, taken over the newletter, helped build an in-patient protocol process, the list goes on. I hope you will find it as fulfilling as I'm finding ours.
 
M

Mommafirst

Guest
My husband and I were asked to join the CF Family Council last year. We've really enjoyed going and have felt that we are making a great contribution. We have also developed a really nice relatioship with the center director (ped doc too) and adult program head. We've become mentors, been trained in HIPPA privacy, created education day, taken over the newletter, helped build an in-patient protocol process, the list goes on. I hope you will find it as fulfilling as I'm finding ours.
 
S

SEANP

New member
Hi,
I also served as the parent advisor to my son's clinic as well. I think you will find it worthwile. You will definitely learn more about what goes on behind the scene and how all of the caregivers interact with each other. You will see them in a different light afterwards. At least I did. Plus it is nice to be able to voice your opinion on matters.
Sean
 
S

SEANP

New member
Hi,
I also served as the parent advisor to my son's clinic as well. I think you will find it worthwile. You will definitely learn more about what goes on behind the scene and how all of the caregivers interact with each other. You will see them in a different light afterwards. At least I did. Plus it is nice to be able to voice your opinion on matters.
Sean
 
S

SEANP

New member
Hi,
I also served as the parent advisor to my son's clinic as well. I think you will find it worthwile. You will definitely learn more about what goes on behind the scene and how all of the caregivers interact with each other. You will see them in a different light afterwards. At least I did. Plus it is nice to be able to voice your opinion on matters.
Sean
 
S

SEANP

New member
Hi,
I also served as the parent advisor to my son's clinic as well. I think you will find it worthwile. You will definitely learn more about what goes on behind the scene and how all of the caregivers interact with each other. You will see them in a different light afterwards. At least I did. Plus it is nice to be able to voice your opinion on matters.
Sean
 
S

SEANP

New member
Hi,
I also served as the parent advisor to my son's clinic as well. I think you will find it worthwile. You will definitely learn more about what goes on behind the scene and how all of the caregivers interact with each other. You will see them in a different light afterwards. At least I did. Plus it is nice to be able to voice your opinion on matters.
Sean
 
M

MOME2RT

New member
I am too a member of a CFAT! It was very humbling being asked to be on. We meet once a month & discuss things on how we can improve the clinic. We recently sent out a questionaire to all the patients for input on what they want to improve.

I am invloved in helping write an article on transition that CFers go through in life for the newsletter.

We are fairly new...a few months, but it is going great! We are working on peer to peer connection....ironing out our bylaws & getting a website up.

Hope you enjoy it as much as I have <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MOME2RT

New member
I am too a member of a CFAT! It was very humbling being asked to be on. We meet once a month & discuss things on how we can improve the clinic. We recently sent out a questionaire to all the patients for input on what they want to improve.

I am invloved in helping write an article on transition that CFers go through in life for the newsletter.

We are fairly new...a few months, but it is going great! We are working on peer to peer connection....ironing out our bylaws & getting a website up.

Hope you enjoy it as much as I have <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MOME2RT

New member
I am too a member of a CFAT! It was very humbling being asked to be on. We meet once a month & discuss things on how we can improve the clinic. We recently sent out a questionaire to all the patients for input on what they want to improve.

I am invloved in helping write an article on transition that CFers go through in life for the newsletter.

We are fairly new...a few months, but it is going great! We are working on peer to peer connection....ironing out our bylaws & getting a website up.

Hope you enjoy it as much as I have <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MOME2RT

New member
I am too a member of a CFAT! It was very humbling being asked to be on. We meet once a month & discuss things on how we can improve the clinic. We recently sent out a questionaire to all the patients for input on what they want to improve.

I am invloved in helping write an article on transition that CFers go through in life for the newsletter.

We are fairly new...a few months, but it is going great! We are working on peer to peer connection....ironing out our bylaws & getting a website up.

Hope you enjoy it as much as I have <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MOME2RT

New member
I am too a member of a CFAT! It was very humbling being asked to be on. We meet once a month & discuss things on how we can improve the clinic. We recently sent out a questionaire to all the patients for input on what they want to improve.
<br />
<br />I am invloved in helping write an article on transition that CFers go through in life for the newsletter.
<br />
<br />We are fairly new...a few months, but it is going great! We are working on peer to peer connection....ironing out our bylaws & getting a website up.
<br />
<br />Hope you enjoy it as much as I have <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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