Attending a Great Strides walk

K

Keepercjr

Guest
I have CF and I go to our local walks - I also run our raffle. I don't wear a mask though. It is an open air environment and everyone just kind of stays with their groups. I do say hi to a few others with CF that I know and only see once a year at the walk. This year I met a little 9yo girl who was SO excited to meet someone else with CF. They keep us so isolated from one another now in the hospital that the youngest generation doesn't have the sense of "community" that older generations had when everyone roomed with everyone else. I think for the kids it can feel really isolating and lonely - so meeting even just 1 other w/ CF was huge for her.
 
T

theLostMiler

New member
I think thats a great point. Of course there are drawbacks to meeting other CF'ers and like someone said, in a sense its not "proven", though it does make sense. Therre are reasons the walks are held outdoors too. But I think the sense of community is definitely lacking for younger cf'ers (such as myself even) b/c of the isolation parts... the first time I met or even heard of another person having CF made a world of difference.
 
T

theLostMiler

New member
I think thats a great point. Of course there are drawbacks to meeting other CF'ers and like someone said, in a sense its not "proven", though it does make sense. Therre are reasons the walks are held outdoors too. But I think the sense of community is definitely lacking for younger cf'ers (such as myself even) b/c of the isolation parts... the first time I met or even heard of another person having CF made a world of difference.
 
T

theLostMiler

New member
I think thats a great point. Of course there are drawbacks to meeting other CF'ers and like someone said, in a sense its not "proven", though it does make sense. Therre are reasons the walks are held outdoors too. But I think the sense of community is definitely lacking for younger cf'ers (such as myself even) b/c of the isolation parts... the first time I met or even heard of another person having CF made a world of difference.
 
M

minimedic304

New member
This may not be the right forum but I want to comment on the isolation issue, because this upsets me the most. I am now 30, I recently started my own foundation for CF...check it out www.breathe-easy.org my entire life, up until 3 years ago, I too was isolated by this disease. I really blame other "foundations" for this...they treat us like leppors, for something that really cant be proven or disproven ... like I said I think its CYA move... The isolation is not a issue anymore...I tell all my business clients and everyone I know about the disease...you would not believe the positive response I get from people once they have learned the details. Now my goal with this foundation is to get the word out, but more importantly bring us together. I currently have another CF patient on my board (we are really in need of others, especially if you live in Florida)...we meet together weekly and so far have never had issue with our health. I really want some more patients with cf to join the foundation, i am very tired of people without the disease thinking they know best...When I meet with my doctors I tell them what I think and many times they agree...the disease is complex and bottom line as a patient we know best.. i am babling a little but as a community we need to support each other, meet and communicate with each other, and not hide behind the disease...the more the public learns the better our lives will become.
 
M

minimedic304

New member
This may not be the right forum but I want to comment on the isolation issue, because this upsets me the most. I am now 30, I recently started my own foundation for CF...check it out www.breathe-easy.org my entire life, up until 3 years ago, I too was isolated by this disease. I really blame other "foundations" for this...they treat us like leppors, for something that really cant be proven or disproven ... like I said I think its CYA move... The isolation is not a issue anymore...I tell all my business clients and everyone I know about the disease...you would not believe the positive response I get from people once they have learned the details. Now my goal with this foundation is to get the word out, but more importantly bring us together. I currently have another CF patient on my board (we are really in need of others, especially if you live in Florida)...we meet together weekly and so far have never had issue with our health. I really want some more patients with cf to join the foundation, i am very tired of people without the disease thinking they know best...When I meet with my doctors I tell them what I think and many times they agree...the disease is complex and bottom line as a patient we know best.. i am babling a little but as a community we need to support each other, meet and communicate with each other, and not hide behind the disease...the more the public learns the better our lives will become.
 
M

minimedic304

New member
This may not be the right forum but I want to comment on the isolation issue, because this upsets me the most. I am now 30, I recently started my own foundation for CF...check it out www.breathe-easy.org my entire life, up until 3 years ago, I too was isolated by this disease. I really blame other "foundations" for this...they treat us like leppors, for something that really cant be proven or disproven ... like I said I think its CYA move... The isolation is not a issue anymore...I tell all my business clients and everyone I know about the disease...you would not believe the positive response I get from people once they have learned the details. Now my goal with this foundation is to get the word out, but more importantly bring us together. I currently have another CF patient on my board (we are really in need of others, especially if you live in Florida)...we meet together weekly and so far have never had issue with our health. I really want some more patients with cf to join the foundation, i am very tired of people without the disease thinking they know best...When I meet with my doctors I tell them what I think and many times they agree...the disease is complex and bottom line as a patient we know best.. i am babling a little but as a community we need to support each other, meet and communicate with each other, and not hide behind the disease...the more the public learns the better our lives will become.
 
B

beleache

New member
Hi Ali,

I have attended many walks as a cf patient..

I try to take whatever precaution possible.. but I do love going & am a pretty good team leader if I do say so myself lol

Hope you enjoy the walk <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Ali,

I have attended many walks as a cf patient..

I try to take whatever precaution possible.. but I do love going & am a pretty good team leader if I do say so myself lol

Hope you enjoy the walk <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Ali,
<br />
<br /> I have attended many walks as a cf patient..
<br />
<br />I try to take whatever precaution possible.. but I do love going & am a pretty good team leader if I do say so myself lol
<br />
<br /> Hope you enjoy the walk <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br /> <img src="i/expressions/heart.gif" border="0"> joni
 
J

Jbenjamin152

New member
I was planning a great strides event in my city, I was working with the cf foundation till I was told that I cultured not only MRSA but also B-Cepecia and I decided to hand the reigns over to someone else it crushed what I had as a "vision" for my cf walk, If I couldn't take the chance to pass cf to my son (we had a donor) I can't see me giving the cultures to another cf'er, even if there isn't another that shows up. I did get alot of my friends to donate money and was able to help orchestrate some things from behind the stages...so to speak but when the actual day came I was no where near there as a respect to the other cf'ers for whom I care about like siblings !!! I also have wanted to go to a "get together" but my feelings are the same, now if you have b-cepecia and mrsa and want to get together and your in upstate ny let me know lol, you and I have LOTS in common <img src="i/expressions/face-icon-small-smile.gif" border="0"> well hope all the walks go great this year raise LOTS OF MONEY and BLAST MATT SCALE'S SONG BREATHE
 
J

Jbenjamin152

New member
I was planning a great strides event in my city, I was working with the cf foundation till I was told that I cultured not only MRSA but also B-Cepecia and I decided to hand the reigns over to someone else it crushed what I had as a "vision" for my cf walk, If I couldn't take the chance to pass cf to my son (we had a donor) I can't see me giving the cultures to another cf'er, even if there isn't another that shows up. I did get alot of my friends to donate money and was able to help orchestrate some things from behind the stages...so to speak but when the actual day came I was no where near there as a respect to the other cf'ers for whom I care about like siblings !!! I also have wanted to go to a "get together" but my feelings are the same, now if you have b-cepecia and mrsa and want to get together and your in upstate ny let me know lol, you and I have LOTS in common <img src="i/expressions/face-icon-small-smile.gif" border="0"> well hope all the walks go great this year raise LOTS OF MONEY and BLAST MATT SCALE'S SONG BREATHE
 
J

Jbenjamin152

New member
I was planning a great strides event in my city, I was working with the cf foundation till I was told that I cultured not only MRSA but also B-Cepecia and I decided to hand the reigns over to someone else it crushed what I had as a "vision" for my cf walk, If I couldn't take the chance to pass cf to my son (we had a donor) I can't see me giving the cultures to another cf'er, even if there isn't another that shows up. I did get alot of my friends to donate money and was able to help orchestrate some things from behind the stages...so to speak but when the actual day came I was no where near there as a respect to the other cf'ers for whom I care about like siblings !!! I also have wanted to go to a "get together" but my feelings are the same, now if you have b-cepecia and mrsa and want to get together and your in upstate ny let me know lol, you and I have LOTS in common <img src="i/expressions/face-icon-small-smile.gif" border="0"> well hope all the walks go great this year raise LOTS OF MONEY and BLAST MATT SCALE'S SONG BREATHE
 
I

iwantmypup

New member
I unfortunately didn't go. :/
Both of the people I was going to walk with were sick (lol, I get better and other people get sick!)
I think there is another one coming up sometime soon. If not this year, maybe next year, I just really want to get more involved in CF.
 
I

iwantmypup

New member
I unfortunately didn't go. :/
Both of the people I was going to walk with were sick (lol, I get better and other people get sick!)
I think there is another one coming up sometime soon. If not this year, maybe next year, I just really want to get more involved in CF.
 
I

iwantmypup

New member
I unfortunately didn't go. :/
<br />Both of the people I was going to walk with were sick (lol, I get better and other people get sick!)
<br />I think there is another one coming up sometime soon. If not this year, maybe next year, I just really want to get more involved in CF.
 
G

Giggles

New member
Our walk says you can not come if you have B Cepacia. But I am not afraid to be around any CF'r no matter what they culture as long as we are outside!!! I know B Cepacia is bad but if you are outside in an open environment I do not feel afraid. And I am a total germaphobia and I wear a mask when I go to CF Clinic.


Jennifer 38 with CF and CFRD
 
G

Giggles

New member
Our walk says you can not come if you have B Cepacia. But I am not afraid to be around any CF'r no matter what they culture as long as we are outside!!! I know B Cepacia is bad but if you are outside in an open environment I do not feel afraid. And I am a total germaphobia and I wear a mask when I go to CF Clinic.


Jennifer 38 with CF and CFRD
 
G

Giggles

New member
Our walk says you can not come if you have B Cepacia. But I am not afraid to be around any CF'r no matter what they culture as long as we are outside!!! I know B Cepacia is bad but if you are outside in an open environment I do not feel afraid. And I am a total germaphobia and I wear a mask when I go to CF Clinic.
<br />
<br />
<br />Jennifer 38 with CF and CFRD
 
You must log in or register to reply here.
Top