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  1. G

    VX-770 to be 250K p/year per patient

    Yes I am really glad this drug is working was discovered and funded cause it can open the doors for others and help others. CF is an orphan disease and ANY progress and meds is WONDERFUL. I represented CF and an Orphan Drug Conference along with some other orphan diseases and we are lucky since...
  2. G

    VX-770 to be 250K p/year per patient

    Yeah I figured as much there was some scientific reason they would pick the mutation they did instead of the Df508, I still don't like it...<br>
  3. G

    VX-770 to be 250K p/year per patient

    Yeah I figured as much there was some scientific reason they would pick the mutation they did instead of the Df508, I still don't like it...<br>
  4. G

    VX-770 to be 250K p/year per patient

    Yeah I figured as much there was some scientific reason they would pick the mutation they did instead of the Df508, I still don't like it...<br>
  5. G

    VX-770 to be 250K p/year per patient

    Yeah if you do not have insurance you are $%^& and even then the copays could be quite high. I think the financial assistance is good for people who need it but there are a TON of people that fall in the middle that don't meet the low requirements for assistance and they have insurance but it...
  6. G

    VX-770 to be 250K p/year per patient

    Yeah if you do not have insurance you are $%^& and even then the copays could be quite high. I think the financial assistance is good for people who need it but there are a TON of people that fall in the middle that don't meet the low requirements for assistance and they have insurance but it...
  7. G

    VX-770 to be 250K p/year per patient

    Yeah if you do not have insurance you are $%^& and even then the copays could be quite high. I think the financial assistance is good for people who need it but there are a TON of people that fall in the middle that don't meet the low requirements for assistance and they have insurance but it...
  8. G

    living life on ivs

    They make these super rubbery tight covers you can put over your arm to cover the picc. I looked into a LONG time ago but what I did not like about it that it was hard to get on and pull on and it yanked the %$^&* out of my arm. So I was scared I was gonna pull the picc line right out. But I am...
  9. G

    living life on ivs

    They make these super rubbery tight covers you can put over your arm to cover the picc. I looked into a LONG time ago but what I did not like about it that it was hard to get on and pull on and it yanked the %$^&* out of my arm. So I was scared I was gonna pull the picc line right out. But I am...
  10. G

    living life on ivs

    They make these super rubbery tight covers you can put over your arm to cover the picc. I looked into a LONG time ago but what I did not like about it that it was hard to get on and pull on and it yanked the %$^&* out of my arm. So I was scared I was gonna pull the picc line right out. But I am...
  11. G

    Owning a business?

    Sue I would contact Beth Sufian who is an attorney who has CF and handles CF disability cases. She will give you precise information. I do not have her number on me but if you google her you should find her contact info. She is out of texas and works with people all over. If you can not find...
  12. G

    Owning a business?

    Sue I would contact Beth Sufian who is an attorney who has CF and handles CF disability cases. She will give you precise information. I do not have her number on me but if you google her you should find her contact info. She is out of texas and works with people all over. If you can not find...
  13. G

    Owning a business?

    Sue I would contact Beth Sufian who is an attorney who has CF and handles CF disability cases. She will give you precise information. I do not have her number on me but if you google her you should find her contact info. She is out of texas and works with people all over. If you can not find...
  14. G

    Owning a business?

    Hate to be a downer. But that is one thing that I am sad about with my husband. He has never been able to pursue a job that does not have GREAT benefits. So no you can not get on an individual plan. However, sometimes states have plans for uninsurable people, for example IL calls it the chip...
  15. G

    Owning a business?

    Hate to be a downer. But that is one thing that I am sad about with my husband. He has never been able to pursue a job that does not have GREAT benefits. So no you can not get on an individual plan. However, sometimes states have plans for uninsurable people, for example IL calls it the chip...
  16. G

    Owning a business?

    Hate to be a downer. But that is one thing that I am sad about with my husband. He has never been able to pursue a job that does not have GREAT benefits. So no you can not get on an individual plan. However, sometimes states have plans for uninsurable people, for example IL calls it the chip...
  17. G

    exercise and the heat

    Make sure to have your child drink Gaterade. It is good for the electrolytes. I drink a ton, living here in Florida. All the salty snacks are good too. Taking breaks to come in for 10-15mins to cool down in the a/c works well too. Personally in the hot heat which is in the summer, I do not do...
  18. G

    exercise and the heat

    Make sure to have your child drink Gaterade. It is good for the electrolytes. I drink a ton, living here in Florida. All the salty snacks are good too. Taking breaks to come in for 10-15mins to cool down in the a/c works well too. Personally in the hot heat which is in the summer, I do not do...
  19. G

    exercise and the heat

    Make sure to have your child drink Gaterade. It is good for the electrolytes. I drink a ton, living here in Florida. All the salty snacks are good too. Taking breaks to come in for 10-15mins to cool down in the a/c works well too. Personally in the hot heat which is in the summer, I do not do...
  20. G

    Go to the White House Website

    Really. I talked to Beth Sufian who is an attorney for CF patients and has helped a ton of people to get SSDI and SSI. She said if they did not get their act together it would affect the checks. And on the news Obama himself says so. I hope it is a scare tactic only... I guess we shall see....<br>
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