people who use cf to make money

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Jason

New member
thanks all, I wanted to let you know that I am feeling better to know you have a basic understanding of what I'm going through. I could use the enzymes at the leaste, I can borrow money for my neb. But If you want to reach me my eamil is jasonrcoverston@yahoo.com thank you

Jason
 
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julie

New member
Jason, do you need a nebulizer? I can't check my hotmail/yahoo email while at work, but if you need a nebulizer, I can see what I can try and do. No guarantees, but I'll get back to you in about 24-48 hours as to whether or not I can get one for you, IF you tell me you need it. I'll be waiting.
 
J

julie

New member
Jason, do you need a nebulizer? I can't check my hotmail/yahoo email while at work, but if you need a nebulizer, I can see what I can try and do. No guarantees, but I'll get back to you in about 24-48 hours as to whether or not I can get one for you, IF you tell me you need it. I'll be waiting.
 
J

julie

New member
Jason, do you need a nebulizer? I can't check my hotmail/yahoo email while at work, but if you need a nebulizer, I can see what I can try and do. No guarantees, but I'll get back to you in about 24-48 hours as to whether or not I can get one for you, IF you tell me you need it. I'll be waiting.
 
S

Scarlett81

New member
I have no med supplies I can offer to you unfortunately.
What I can offer you is this-I used Beth Suffian for my SSA case last year. SSA made an error in approving me for benefits, but kept sending me checks anyway. They never notified me that my benefits were canceled. ThenI got a bill for 4 years of benefits back-about $22,000. Of course, that money had gone to legit med expenses. Beth was able to completely take care of the situation. She gave me lots of helpful advice. SSA is hard to go up against-but if anyone can, Beth can help you. Not to mention, she has a grant to help cfers for free.

Also, I'd like to say that I know of several cf centers that would not deny you an appointment, just to talk to try to help you. I am sure my doctor would never turn anyone away. And I know my old ped doctor always kept nebs and meds and gave them to people in need at no charge. And I hear he wasn't the only one that did that. I don't know you, but it was mentioned in a few posts that you are just coming to terms of dealing with your cf. Maybe you were in a type of denial for a long time-like I was, and many of us were. But to be frank, you have to go out there and make phone calls and find help. I'm glad you took Julie up on her offer. And call Beth yourself-she can give you the legal advice, and I'm sure she can give you a number to call or a doc to call about getting some meds or something.

I think its good you came to this site. Don't let others opinions bother you to the point where you won't come here and do research and learn. You have to educate yourself more about your disease.

Now this part is called tough love-I only say this to try and help you, not at all to be mean, Jason. You cannot expect donations of money, or people's extra meds to sustain you. Maybe for a few weeks or months that would help, but you need long term help. Your cf isn't going anywhere-as you know. There are lots of people in your situation, you aren't the only one. As I said above, you need to make the calls to get help here. Someone mentioned in a post-"this is a 24 year old kid..." 24 is not a kid. You are a grown man. I am happy you came to this site and contacted Julie. Thats a good start. But putting up a webpage asking for a handout isn't doing the work to change your life. PLEASE- As a fellow cfer that cares, call some cf centers-go to cff.org, find cf centers in your state, and call them just to talk to someone on the phone and explain your situatiion. Most of these are good docs and employees that are dedicated to cf. Someone will help.
Again, I say all this to motivate you, not to upset anyone.
Wish you the best.
 
S

Scarlett81

New member
I have no med supplies I can offer to you unfortunately.
What I can offer you is this-I used Beth Suffian for my SSA case last year. SSA made an error in approving me for benefits, but kept sending me checks anyway. They never notified me that my benefits were canceled. ThenI got a bill for 4 years of benefits back-about $22,000. Of course, that money had gone to legit med expenses. Beth was able to completely take care of the situation. She gave me lots of helpful advice. SSA is hard to go up against-but if anyone can, Beth can help you. Not to mention, she has a grant to help cfers for free.

Also, I'd like to say that I know of several cf centers that would not deny you an appointment, just to talk to try to help you. I am sure my doctor would never turn anyone away. And I know my old ped doctor always kept nebs and meds and gave them to people in need at no charge. And I hear he wasn't the only one that did that. I don't know you, but it was mentioned in a few posts that you are just coming to terms of dealing with your cf. Maybe you were in a type of denial for a long time-like I was, and many of us were. But to be frank, you have to go out there and make phone calls and find help. I'm glad you took Julie up on her offer. And call Beth yourself-she can give you the legal advice, and I'm sure she can give you a number to call or a doc to call about getting some meds or something.

I think its good you came to this site. Don't let others opinions bother you to the point where you won't come here and do research and learn. You have to educate yourself more about your disease.

Now this part is called tough love-I only say this to try and help you, not at all to be mean, Jason. You cannot expect donations of money, or people's extra meds to sustain you. Maybe for a few weeks or months that would help, but you need long term help. Your cf isn't going anywhere-as you know. There are lots of people in your situation, you aren't the only one. As I said above, you need to make the calls to get help here. Someone mentioned in a post-"this is a 24 year old kid..." 24 is not a kid. You are a grown man. I am happy you came to this site and contacted Julie. Thats a good start. But putting up a webpage asking for a handout isn't doing the work to change your life. PLEASE- As a fellow cfer that cares, call some cf centers-go to cff.org, find cf centers in your state, and call them just to talk to someone on the phone and explain your situatiion. Most of these are good docs and employees that are dedicated to cf. Someone will help.
Again, I say all this to motivate you, not to upset anyone.
Wish you the best.
 
S

Scarlett81

New member
I have no med supplies I can offer to you unfortunately.
What I can offer you is this-I used Beth Suffian for my SSA case last year. SSA made an error in approving me for benefits, but kept sending me checks anyway. They never notified me that my benefits were canceled. ThenI got a bill for 4 years of benefits back-about $22,000. Of course, that money had gone to legit med expenses. Beth was able to completely take care of the situation. She gave me lots of helpful advice. SSA is hard to go up against-but if anyone can, Beth can help you. Not to mention, she has a grant to help cfers for free.

Also, I'd like to say that I know of several cf centers that would not deny you an appointment, just to talk to try to help you. I am sure my doctor would never turn anyone away. And I know my old ped doctor always kept nebs and meds and gave them to people in need at no charge. And I hear he wasn't the only one that did that. I don't know you, but it was mentioned in a few posts that you are just coming to terms of dealing with your cf. Maybe you were in a type of denial for a long time-like I was, and many of us were. But to be frank, you have to go out there and make phone calls and find help. I'm glad you took Julie up on her offer. And call Beth yourself-she can give you the legal advice, and I'm sure she can give you a number to call or a doc to call about getting some meds or something.

I think its good you came to this site. Don't let others opinions bother you to the point where you won't come here and do research and learn. You have to educate yourself more about your disease.

Now this part is called tough love-I only say this to try and help you, not at all to be mean, Jason. You cannot expect donations of money, or people's extra meds to sustain you. Maybe for a few weeks or months that would help, but you need long term help. Your cf isn't going anywhere-as you know. There are lots of people in your situation, you aren't the only one. As I said above, you need to make the calls to get help here. Someone mentioned in a post-"this is a 24 year old kid..." 24 is not a kid. You are a grown man. I am happy you came to this site and contacted Julie. Thats a good start. But putting up a webpage asking for a handout isn't doing the work to change your life. PLEASE- As a fellow cfer that cares, call some cf centers-go to cff.org, find cf centers in your state, and call them just to talk to someone on the phone and explain your situatiion. Most of these are good docs and employees that are dedicated to cf. Someone will help.
Again, I say all this to motivate you, not to upset anyone.
Wish you the best.
 
A

amoo74

Member
I thought this guy was questionable when I saw his video. I don't argue with the fact that he has cf. But I sent him an email and asked him what specific damaging infection he had that caused his life to be in iminent danger. Of course not in those words, but still. I did this in a very kind way. I also suggested that he try to get some assistance from some government agencies. I told him that I worked full time and still was able to get assistance with my med costs and hospitalizations. He never responded to me. I realize that he might have a lot of emails and it takes some time to answer them all. But if I wanted someone to send me money, you'd better believe that I would take the time to answer them.

He may be trying to just get himself some help for legitimate reasons. But if he is such an advocate of helping people with cf, you would think he would know more about how to do things the right way.

Asking other people with cf is one thing. But asking people in general is not a good idea. I mean, what if they donate and this turns out to be a scam. I think it could give us all a bad name.

I wish I could talk to Jason face to face. I would just tell him that people are really concerned about his approach and that there are other ways. I mean, what is he going to do if he needs a transplant. That is a huge expense that no government agency can completely cover. He should use the resources that are available to him as they are. He should save the solicitation for something big like that.
 
A

amoo74

Member
I thought this guy was questionable when I saw his video. I don't argue with the fact that he has cf. But I sent him an email and asked him what specific damaging infection he had that caused his life to be in iminent danger. Of course not in those words, but still. I did this in a very kind way. I also suggested that he try to get some assistance from some government agencies. I told him that I worked full time and still was able to get assistance with my med costs and hospitalizations. He never responded to me. I realize that he might have a lot of emails and it takes some time to answer them all. But if I wanted someone to send me money, you'd better believe that I would take the time to answer them.

He may be trying to just get himself some help for legitimate reasons. But if he is such an advocate of helping people with cf, you would think he would know more about how to do things the right way.

Asking other people with cf is one thing. But asking people in general is not a good idea. I mean, what if they donate and this turns out to be a scam. I think it could give us all a bad name.

I wish I could talk to Jason face to face. I would just tell him that people are really concerned about his approach and that there are other ways. I mean, what is he going to do if he needs a transplant. That is a huge expense that no government agency can completely cover. He should use the resources that are available to him as they are. He should save the solicitation for something big like that.
 
A

amoo74

Member
I thought this guy was questionable when I saw his video. I don't argue with the fact that he has cf. But I sent him an email and asked him what specific damaging infection he had that caused his life to be in iminent danger. Of course not in those words, but still. I did this in a very kind way. I also suggested that he try to get some assistance from some government agencies. I told him that I worked full time and still was able to get assistance with my med costs and hospitalizations. He never responded to me. I realize that he might have a lot of emails and it takes some time to answer them all. But if I wanted someone to send me money, you'd better believe that I would take the time to answer them.

He may be trying to just get himself some help for legitimate reasons. But if he is such an advocate of helping people with cf, you would think he would know more about how to do things the right way.

Asking other people with cf is one thing. But asking people in general is not a good idea. I mean, what if they donate and this turns out to be a scam. I think it could give us all a bad name.

I wish I could talk to Jason face to face. I would just tell him that people are really concerned about his approach and that there are other ways. I mean, what is he going to do if he needs a transplant. That is a huge expense that no government agency can completely cover. He should use the resources that are available to him as they are. He should save the solicitation for something big like that.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>
Why must we drudge this up over a month++++ later?</end quote></div>

I wondered that myself.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>
Why must we drudge this up over a month++++ later?</end quote></div>

I wondered that myself.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>
Why must we drudge this up over a month++++ later?</end quote></div>

I wondered that myself.
 
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