people who use cf to make money

julie · Jan 7, 2007

To satisify your curiosity Kylie <img src="i/expressions/face-icon-small-smile.gif" border="0"> and anyone else....

Jason emailed me this afternoon and I just emailed him back. personally, I believe that he is very genuine, although not that educated about his own sickness. He wouldn't be the first person I've met who didn't know much about their own medical condition, and there's no need to judge him for it. It appears to me, that he is doing all he can to educate himself now. I'm going to help him.

Maybe we can all back off and give him the benefit of the doubt and try to help him? I can only imagine how crappy he's feeling after reading these posts here, and he's shared with me how he's feeling. So can we please just try to assist him at this time?

I've made it clear that I can't help him financially, however, If he needs it, I am going to try and find a nebulizer for him (any donators if he is needing one?). Or if he currently has one, something like Pulmozyme that I/others can send to him. I don't want to send him TOBI until he gets checked out by a doctor just to be safe. Also, if he is in need of enzymes, I can get those too.

I've also asked some questions to get more information so I can better assist him. If he allows me, I will work with him to get him information and hopefully qualify for GHPP, in addition to medi-cal. I also asked him some questions about his SSA lawyer. I recommended Beth Sufian. I had a lawyer for Mark's case, but aside from paperwork, the guy was useless. HOwever, with Beth's help, I was able to do all the talking at Mark's hearing (his lawyer said 1 sentence, seriously) and understand the CF SSA impairment listings which is the ONLY thing that helped us win the case.

he may also be eligible for food stamps (depending on his living situation) which I can help with, and also maybe some tax info if he did work this year. Try to get him a 100% refund for medical deductions.

I just wanted to let everyone who was asking, know that YES he has contacted me and I will do what I can to help him. He could probably use some moral support too though.

julie · Jan 7, 2007

To satisify your curiosity Kylie <img src="i/expressions/face-icon-small-smile.gif" border="0"> and anyone else....

Jason emailed me this afternoon and I just emailed him back. personally, I believe that he is very genuine, although not that educated about his own sickness. He wouldn't be the first person I've met who didn't know much about their own medical condition, and there's no need to judge him for it. It appears to me, that he is doing all he can to educate himself now. I'm going to help him.

Maybe we can all back off and give him the benefit of the doubt and try to help him? I can only imagine how crappy he's feeling after reading these posts here, and he's shared with me how he's feeling. So can we please just try to assist him at this time?

I've made it clear that I can't help him financially, however, If he needs it, I am going to try and find a nebulizer for him (any donators if he is needing one?). Or if he currently has one, something like Pulmozyme that I/others can send to him. I don't want to send him TOBI until he gets checked out by a doctor just to be safe. Also, if he is in need of enzymes, I can get those too.

I've also asked some questions to get more information so I can better assist him. If he allows me, I will work with him to get him information and hopefully qualify for GHPP, in addition to medi-cal. I also asked him some questions about his SSA lawyer. I recommended Beth Sufian. I had a lawyer for Mark's case, but aside from paperwork, the guy was useless. HOwever, with Beth's help, I was able to do all the talking at Mark's hearing (his lawyer said 1 sentence, seriously) and understand the CF SSA impairment listings which is the ONLY thing that helped us win the case.

he may also be eligible for food stamps (depending on his living situation) which I can help with, and also maybe some tax info if he did work this year. Try to get him a 100% refund for medical deductions.

I just wanted to let everyone who was asking, know that YES he has contacted me and I will do what I can to help him. He could probably use some moral support too though.

julie · Jan 7, 2007

To satisify your curiosity Kylie <img src="i/expressions/face-icon-small-smile.gif" border="0"> and anyone else....

Jason emailed me this afternoon and I just emailed him back. personally, I believe that he is very genuine, although not that educated about his own sickness. He wouldn't be the first person I've met who didn't know much about their own medical condition, and there's no need to judge him for it. It appears to me, that he is doing all he can to educate himself now. I'm going to help him.

Maybe we can all back off and give him the benefit of the doubt and try to help him? I can only imagine how crappy he's feeling after reading these posts here, and he's shared with me how he's feeling. So can we please just try to assist him at this time?

I've made it clear that I can't help him financially, however, If he needs it, I am going to try and find a nebulizer for him (any donators if he is needing one?). Or if he currently has one, something like Pulmozyme that I/others can send to him. I don't want to send him TOBI until he gets checked out by a doctor just to be safe. Also, if he is in need of enzymes, I can get those too.

I've also asked some questions to get more information so I can better assist him. If he allows me, I will work with him to get him information and hopefully qualify for GHPP, in addition to medi-cal. I also asked him some questions about his SSA lawyer. I recommended Beth Sufian. I had a lawyer for Mark's case, but aside from paperwork, the guy was useless. HOwever, with Beth's help, I was able to do all the talking at Mark's hearing (his lawyer said 1 sentence, seriously) and understand the CF SSA impairment listings which is the ONLY thing that helped us win the case.

he may also be eligible for food stamps (depending on his living situation) which I can help with, and also maybe some tax info if he did work this year. Try to get him a 100% refund for medical deductions.

I just wanted to let everyone who was asking, know that YES he has contacted me and I will do what I can to help him. He could probably use some moral support too though.

Chaggie · Jan 7, 2007

I have pulmozyme I can't use anymore. I'm more than willing to send it to him. Next month I might be able to send some enzymes as well. I may even have a compressor I can get ahold of.

Chaggie · Jan 7, 2007

I have pulmozyme I can't use anymore. I'm more than willing to send it to him. Next month I might be able to send some enzymes as well. I may even have a compressor I can get ahold of.

Chaggie · Jan 7, 2007

I have pulmozyme I can't use anymore. I'm more than willing to send it to him. Next month I might be able to send some enzymes as well. I may even have a compressor I can get ahold of.

Mandi1404 · Jan 7, 2007

I'm gonna check all my meds and see if I have extras. I'll get back to ya tomorrow with that. can he give us an idea of some of the meds he use to take? Like which enzymes he used? This way we'll be able to send him the right ones and all.

Mandi1404 · Jan 7, 2007

I'm gonna check all my meds and see if I have extras. I'll get back to ya tomorrow with that. can he give us an idea of some of the meds he use to take? Like which enzymes he used? This way we'll be able to send him the right ones and all.

Mandi1404 · Jan 7, 2007

I'm gonna check all my meds and see if I have extras. I'll get back to ya tomorrow with that. can he give us an idea of some of the meds he use to take? Like which enzymes he used? This way we'll be able to send him the right ones and all.

Liamsmommy · Jan 7, 2007

I dont know if this will help at all but for a sort term help with money..... My 2 year old was dx with type one Diabeties and we had no insuance and no way of getting her an Insulin pump (7400 plus 400 per month to run it) she was only 14 months old and the insulin injections were not working well for her it was her only hope of getting on trak.
We contacted our local media news paper and TV it reached people 4 hours south of us 3 hours north of us and 2 east and west. We had set up a trust account for her and it was amazing!!! we had raised over 10 000 dollars is less then a week and it helped us get her on ACSD (assistance for children with disability) We are from Ontario canada. It hasnt helped with our monthly running coast but it got her the pump and some suplies and helped untill she was able to get on ACSD it help with some not all but some of the coast.

Just a thought that might help with founding right now! I know that everything else takes time and by the sounds of things Time isnt something that Jason has to wait on. The media can be a wonderful help A getting him to a CF center and B getting to the bottem of his claim and maybe even fast traking it (medical and SSA). you would be surprised at the help he could get if he reaches out to his local midia. just a thought

The Internet isnt that great people will call you a liar and what not but your Local media will find the facts and print the story to try and help it may even help his case with SSA.

Hope this helps
Shawna

Liamsmommy · Jan 7, 2007

I dont know if this will help at all but for a sort term help with money..... My 2 year old was dx with type one Diabeties and we had no insuance and no way of getting her an Insulin pump (7400 plus 400 per month to run it) she was only 14 months old and the insulin injections were not working well for her it was her only hope of getting on trak.
We contacted our local media news paper and TV it reached people 4 hours south of us 3 hours north of us and 2 east and west. We had set up a trust account for her and it was amazing!!! we had raised over 10 000 dollars is less then a week and it helped us get her on ACSD (assistance for children with disability) We are from Ontario canada. It hasnt helped with our monthly running coast but it got her the pump and some suplies and helped untill she was able to get on ACSD it help with some not all but some of the coast.

Just a thought that might help with founding right now! I know that everything else takes time and by the sounds of things Time isnt something that Jason has to wait on. The media can be a wonderful help A getting him to a CF center and B getting to the bottem of his claim and maybe even fast traking it (medical and SSA). you would be surprised at the help he could get if he reaches out to his local midia. just a thought

The Internet isnt that great people will call you a liar and what not but your Local media will find the facts and print the story to try and help it may even help his case with SSA.

Hope this helps
Shawna

Liamsmommy · Jan 7, 2007

I dont know if this will help at all but for a sort term help with money..... My 2 year old was dx with type one Diabeties and we had no insuance and no way of getting her an Insulin pump (7400 plus 400 per month to run it) she was only 14 months old and the insulin injections were not working well for her it was her only hope of getting on trak.
We contacted our local media news paper and TV it reached people 4 hours south of us 3 hours north of us and 2 east and west. We had set up a trust account for her and it was amazing!!! we had raised over 10 000 dollars is less then a week and it helped us get her on ACSD (assistance for children with disability) We are from Ontario canada. It hasnt helped with our monthly running coast but it got her the pump and some suplies and helped untill she was able to get on ACSD it help with some not all but some of the coast.

Just a thought that might help with founding right now! I know that everything else takes time and by the sounds of things Time isnt something that Jason has to wait on. The media can be a wonderful help A getting him to a CF center and B getting to the bottem of his claim and maybe even fast traking it (medical and SSA). you would be surprised at the help he could get if he reaches out to his local midia. just a thought

The Internet isnt that great people will call you a liar and what not but your Local media will find the facts and print the story to try and help it may even help his case with SSA.

Hope this helps
Shawna

Landy · Jan 7, 2007

Here's an idea I had. Since some don't feel comfortable sending him money, or feel that they don't have enough money to contribute to make much of a difference for him---what if we set up a fund to pay for him to go to his nearest CF Clinic? Then people could send as little as $5, or whatever they feel comfortable with, and hopefully it would add up to enough to get him seen at the clinic.

We could contact that clinic and let them know what we're doing (taking a collection) & then we'll send that money directly to this clinic, ear marked for Jason's care. Then at least he's getting some kind of care from someone that knows what the heck they're dealing with and not some emergency clinic that really is not well versed in CF care. Surely they would have sample meds at the CFC that they could get him started on and maybe an extra nebulizer too, if needed?

Maybe the donations could be sent to Jeanne (if she agrees) or to one of us long-timers and we could make sure it gets to the appropriate CF Clinic?

Again, just an idea...what does everyone think?

Landy · Jan 7, 2007

Here's an idea I had. Since some don't feel comfortable sending him money, or feel that they don't have enough money to contribute to make much of a difference for him---what if we set up a fund to pay for him to go to his nearest CF Clinic? Then people could send as little as $5, or whatever they feel comfortable with, and hopefully it would add up to enough to get him seen at the clinic.

We could contact that clinic and let them know what we're doing (taking a collection) & then we'll send that money directly to this clinic, ear marked for Jason's care. Then at least he's getting some kind of care from someone that knows what the heck they're dealing with and not some emergency clinic that really is not well versed in CF care. Surely they would have sample meds at the CFC that they could get him started on and maybe an extra nebulizer too, if needed?

Maybe the donations could be sent to Jeanne (if she agrees) or to one of us long-timers and we could make sure it gets to the appropriate CF Clinic?

Again, just an idea...what does everyone think?

Landy · Jan 7, 2007

Here's an idea I had. Since some don't feel comfortable sending him money, or feel that they don't have enough money to contribute to make much of a difference for him---what if we set up a fund to pay for him to go to his nearest CF Clinic? Then people could send as little as $5, or whatever they feel comfortable with, and hopefully it would add up to enough to get him seen at the clinic.

We could contact that clinic and let them know what we're doing (taking a collection) & then we'll send that money directly to this clinic, ear marked for Jason's care. Then at least he's getting some kind of care from someone that knows what the heck they're dealing with and not some emergency clinic that really is not well versed in CF care. Surely they would have sample meds at the CFC that they could get him started on and maybe an extra nebulizer too, if needed?

Maybe the donations could be sent to Jeanne (if she agrees) or to one of us long-timers and we could make sure it gets to the appropriate CF Clinic?

Again, just an idea...what does everyone think?

Liamsmommy · Jan 7, 2007

<div class="FTQUOTE"><begin quote>We could contact that clinic and let them know what we're doing (taking a collection) & then we'll send that money directly to this clinic, ear marked for Jason's care. </end quote></div>

I know that with my Daughter there was a problem with legalities sending money right to her clinic they said that they can not take donations for someone. So it might be good to set up a trust insted

Liamsmommy · Jan 7, 2007

<div class="FTQUOTE"><begin quote>We could contact that clinic and let them know what we're doing (taking a collection) & then we'll send that money directly to this clinic, ear marked for Jason's care. </end quote></div>

I know that with my Daughter there was a problem with legalities sending money right to her clinic they said that they can not take donations for someone. So it might be good to set up a trust insted

Liamsmommy · Jan 7, 2007

<div class="FTQUOTE"><begin quote>We could contact that clinic and let them know what we're doing (taking a collection) & then we'll send that money directly to this clinic, ear marked for Jason's care. </end quote></div>

I know that with my Daughter there was a problem with legalities sending money right to her clinic they said that they can not take donations for someone. So it might be good to set up a trust insted

Jason · Jan 8, 2007

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

Jason · Jan 8, 2007

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

people who use cf to make money

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