What can we do to get the enzymes back on the market?

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rosesixtyfive

New member
I read somewhere that people had written to senators? What can we do? Who can we write? I don't want my little boy to suffer or stop growing when his Pancreacarb wears out. Having CF is hard enough without having a medicine that makes your life so much better become unavailable.
I want to protest. What do I do?
Thanks,
rosesixtyfive, mother of Sam (ddf508), 9 months old, and Robin (no CF), 5 years old
 
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rosesixtyfive

New member
I read somewhere that people had written to senators? What can we do? Who can we write? I don't want my little boy to suffer or stop growing when his Pancreacarb wears out. Having CF is hard enough without having a medicine that makes your life so much better become unavailable.
I want to protest. What do I do?
Thanks,
rosesixtyfive, mother of Sam (ddf508), 9 months old, and Robin (no CF), 5 years old
 
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rosesixtyfive

New member
I read somewhere that people had written to senators? What can we do? Who can we write? I don't want my little boy to suffer or stop growing when his Pancreacarb wears out. Having CF is hard enough without having a medicine that makes your life so much better become unavailable.
<br />I want to protest. What do I do?
<br />Thanks,
<br />rosesixtyfive, mother of Sam (ddf508), 9 months old, and Robin (no CF), 5 years old
 
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Rebjane

Super Moderator
Send an e mail of your personal story to the FDA. The email is theresa.toigo@fda.hhs.gov. Also call your senators, I would just google them for your state and they will have a # to call or e-mail. I sent an e-mail to the FDA yesterday. I guess the more we send the better since CF is a rare/orphan disease.

Rebecca
 
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Rebjane

Super Moderator
Send an e mail of your personal story to the FDA. The email is theresa.toigo@fda.hhs.gov. Also call your senators, I would just google them for your state and they will have a # to call or e-mail. I sent an e-mail to the FDA yesterday. I guess the more we send the better since CF is a rare/orphan disease.

Rebecca
 
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Rebjane

Super Moderator
Send an e mail of your personal story to the FDA. The email is theresa.toigo@fda.hhs.gov. Also call your senators, I would just google them for your state and they will have a # to call or e-mail. I sent an e-mail to the FDA yesterday. I guess the more we send the better since CF is a rare/orphan disease.
<br />
<br />Rebecca
 
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Ratatosk

Administrator
Staff member
I just sent her an email. With DS he has used other enzymes in the past, unfortunately it was Pancreacarb. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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Ratatosk

Administrator
Staff member
I just sent her an email. With DS he has used other enzymes in the past, unfortunately it was Pancreacarb. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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Ratatosk

Administrator
Staff member
I just sent her an email. With DS he has used other enzymes in the past, unfortunately it was Pancreacarb. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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angelsmom

New member
I have also sent an email to the FDA.

If you are on Facebook, check out the Cystic Fibrosis Foundation page. I saw some comments posted there with additional comments. I am sure someone at the CFF monitors that page and who knows, maybe they are keeping a tally of the number of people upset over this issue! One can hope!
 
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angelsmom

New member
I have also sent an email to the FDA.

If you are on Facebook, check out the Cystic Fibrosis Foundation page. I saw some comments posted there with additional comments. I am sure someone at the CFF monitors that page and who knows, maybe they are keeping a tally of the number of people upset over this issue! One can hope!
 
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angelsmom

New member
I have also sent an email to the FDA.
<br />
<br />If you are on Facebook, check out the Cystic Fibrosis Foundation page. I saw some comments posted there with additional comments. I am sure someone at the CFF monitors that page and who knows, maybe they are keeping a tally of the number of people upset over this issue! One can hope!
 
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