Is there a need?

[mum2kj]

We have a program like that through our cf foundation. It includes gym memberships, sports club ect.. and I'm sure there are heaps of official forms to fill out. I havn't used it though as I found out about it too late. Kj only uses our gym equipment at home. But we do have a reimbursement scheme where you can get 30% of costs back out of $300.00 for anything cf prescribed.

So it can work and its good for kids/adults with cf to participate in sport. Most of the time we are shelling out our money on food and meds and bills and can't afford the sports stuff.

I wish you luck with your endeavour!! <img src="">

 

[mum2kj]

We have a program like that through our cf foundation. It includes gym memberships, sports club ect.. and I'm sure there are heaps of official forms to fill out. I havn't used it though as I found out about it too late. Kj only uses our gym equipment at home. But we do have a reimbursement scheme where you can get 30% of costs back out of $300.00 for anything cf prescribed.

So it can work and its good for kids/adults with cf to participate in sport. Most of the time we are shelling out our money on food and meds and bills and can't afford the sports stuff.

I wish you luck with your endeavour!! <img src="">

 

[hikingmomde]

Thanks for all the great feedback. A lot of stuff that I had been thinking about was definitely re-inforced with all of your thoughts.
If I can get it up and rolling, I'll keep the board posted.

 

[hikingmomde]

Thanks for all the great feedback. A lot of stuff that I had been thinking about was definitely re-inforced with all of your thoughts.
If I can get it up and rolling, I'll keep the board posted.

 

[hikingmomde]

Thanks for all the great feedback. A lot of stuff that I had been thinking about was definitely re-inforced with all of your thoughts.
If I can get it up and rolling, I'll keep the board posted.

 

[babimam]

I think it would be a great idea ! So many of us have to put any extra we have into the medical side that there is nothing for the activities. I wonder if programs like moo money that is run by Turkey Hill in PA would honor such a fund ? We have just registered with them for my Son's scout pack. Might be worth looking into. Since there can't be a organised camp for CF kids because of restrictions maybe a central fund can recieve funding.
As for the research point brought up, we give enough to the research side. It would be nice to give to something that the kids could benefit from now.
I like this fund idea !<img src="i/expressions/face-icon-small-happy.gif" border="0"> If I can help let me know !

 

[babimam]

I think it would be a great idea ! So many of us have to put any extra we have into the medical side that there is nothing for the activities. I wonder if programs like moo money that is run by Turkey Hill in PA would honor such a fund ? We have just registered with them for my Son's scout pack. Might be worth looking into. Since there can't be a organised camp for CF kids because of restrictions maybe a central fund can recieve funding.
As for the research point brought up, we give enough to the research side. It would be nice to give to something that the kids could benefit from now.
I like this fund idea !<img src="i/expressions/face-icon-small-happy.gif" border="0"> If I can help let me know !

 

[babimam]

I think it would be a great idea ! So many of us have to put any extra we have into the medical side that there is nothing for the activities. I wonder if programs like moo money that is run by Turkey Hill in PA would honor such a fund ? We have just registered with them for my Son's scout pack. Might be worth looking into. Since there can't be a organised camp for CF kids because of restrictions maybe a central fund can recieve funding.
As for the research point brought up, we give enough to the research side. It would be nice to give to something that the kids could benefit from now.
I like this fund idea !<img src="i/expressions/face-icon-small-happy.gif" border="0"> If I can help let me know !

 

[EnergyGal]

GREAT idea! Perhaps you can get one of the CF doctors to write you a letter to have on a website. I would get other families involved so it would be a group effort.

An activity fund would be a great way to raise awareness for this disease.

 

[EnergyGal]

GREAT idea! Perhaps you can get one of the CF doctors to write you a letter to have on a website. I would get other families involved so it would be a group effort.

An activity fund would be a great way to raise awareness for this disease.

 

[EnergyGal]

GREAT idea! Perhaps you can get one of the CF doctors to write you a letter to have on a website. I would get other families involved so it would be a group effort.

An activity fund would be a great way to raise awareness for this disease.

 

[smilehs]

Hi!
First time to this site. I read one of your blogs about your son RSV being what led you to a pulmonary doctor. My 21 month old son Jake is currently going through what was RSV and now what has turned into double pneumonia. This is his second bought of pneumonia within 4 months. He just doesnt seem to be able to get a cold. Fisrt his doctors said its just croup ( 6 times last year), now they say its asthma, now RSV and Pneumonia. My doctor thinks im crazy when I bring up CF testing. His weight has been the same for about 8 months he is 27 pounds and now with this new bought of pneumonia has lost 3 pounds because he refuses to eat. Is CF somthing that I should go to a pulmonary doctor to discuss? Sorry for rambling,but my doctor just asked me today is he had ever been tested for CF. Im a little ancy to say the least. Any advice would be great. Thanks for reading.

Heather Searles

 

[smilehs]

Hi!
First time to this site. I read one of your blogs about your son RSV being what led you to a pulmonary doctor. My 21 month old son Jake is currently going through what was RSV and now what has turned into double pneumonia. This is his second bought of pneumonia within 4 months. He just doesnt seem to be able to get a cold. Fisrt his doctors said its just croup ( 6 times last year), now they say its asthma, now RSV and Pneumonia. My doctor thinks im crazy when I bring up CF testing. His weight has been the same for about 8 months he is 27 pounds and now with this new bought of pneumonia has lost 3 pounds because he refuses to eat. Is CF somthing that I should go to a pulmonary doctor to discuss? Sorry for rambling,but my doctor just asked me today is he had ever been tested for CF. Im a little ancy to say the least. Any advice would be great. Thanks for reading.

Heather Searles

 

[smilehs]

Hi!
First time to this site. I read one of your blogs about your son RSV being what led you to a pulmonary doctor. My 21 month old son Jake is currently going through what was RSV and now what has turned into double pneumonia. This is his second bought of pneumonia within 4 months. He just doesnt seem to be able to get a cold. Fisrt his doctors said its just croup ( 6 times last year), now they say its asthma, now RSV and Pneumonia. My doctor thinks im crazy when I bring up CF testing. His weight has been the same for about 8 months he is 27 pounds and now with this new bought of pneumonia has lost 3 pounds because he refuses to eat. Is CF somthing that I should go to a pulmonary doctor to discuss? Sorry for rambling,but my doctor just asked me today is he had ever been tested for CF. Im a little ancy to say the least. Any advice would be great. Thanks for reading.

Heather Searles

 

[thefrogprincess]

Cool! My parents spent a lot of money that they really didn't have so that I could play sports. AN organization like that would have been a real help!

 

[thefrogprincess]

Cool! My parents spent a lot of money that they really didn't have so that I could play sports. AN organization like that would have been a real help!

 

[thefrogprincess]

Cool! My parents spent a lot of money that they really didn't have so that I could play sports. AN organization like that would have been a real help!

 

[cdale613]

There are similar organizations in other countries - for example, <a target=_blank class=ftalternatingbarlinklarge href="http://www.breath4cf.co.nz/default.asp">http://www.breath4cf.co.nz/default.asp</a> does exactly what you are talking about in New Zealand. I believe the site has information about how they got started etc. They also appear to have been integrated with the larger New Zealand CF association... I doubt you could convince the CFF to be as nice. In 2005, a Canadian spinoff was also formed: <a target=_blank class=ftalternatingbarlinklarge href="http://www.breath4cf.ca/.">http://www.breath4cf.ca/.</a> I know they share the same mission and goals, but believe they are independent of the NZ group and other Canadian CF groups.

Personally I think its a great idea, and that the benefits and role of exercise in CF care needs to be emphasized much more than it is. I also hope you develop a way to means-test the program so that those with the greatest financial hurdles get the most help. (Although if you want to buy me a new bike, I'd love it!)


I'm sure they could point you in the right direction.

Chris

26 m w/CF

 

[cdale613]

There are similar organizations in other countries - for example, <a target=_blank class=ftalternatingbarlinklarge href="http://www.breath4cf.co.nz/default.asp">http://www.breath4cf.co.nz/default.asp</a> does exactly what you are talking about in New Zealand. I believe the site has information about how they got started etc. They also appear to have been integrated with the larger New Zealand CF association... I doubt you could convince the CFF to be as nice. In 2005, a Canadian spinoff was also formed: <a target=_blank class=ftalternatingbarlinklarge href="http://www.breath4cf.ca/.">http://www.breath4cf.ca/.</a> I know they share the same mission and goals, but believe they are independent of the NZ group and other Canadian CF groups.

Personally I think its a great idea, and that the benefits and role of exercise in CF care needs to be emphasized much more than it is. I also hope you develop a way to means-test the program so that those with the greatest financial hurdles get the most help. (Although if you want to buy me a new bike, I'd love it!)


I'm sure they could point you in the right direction.

Chris

26 m w/CF

 

[cdale613]

There are similar organizations in other countries - for example, <a target=_blank class=ftalternatingbarlinklarge href="http://www.breath4cf.co.nz/default.asp">http://www.breath4cf.co.nz/default.asp</a> does exactly what you are talking about in New Zealand. I believe the site has information about how they got started etc. They also appear to have been integrated with the larger New Zealand CF association... I doubt you could convince the CFF to be as nice. In 2005, a Canadian spinoff was also formed: <a target=_blank class=ftalternatingbarlinklarge href="http://www.breath4cf.ca/.">http://www.breath4cf.ca/.</a> I know they share the same mission and goals, but believe they are independent of the NZ group and other Canadian CF groups.

Personally I think its a great idea, and that the benefits and role of exercise in CF care needs to be emphasized much more than it is. I also hope you develop a way to means-test the program so that those with the greatest financial hurdles get the most help. (Although if you want to buy me a new bike, I'd love it!)


I'm sure they could point you in the right direction.

Chris

26 m w/CF