Cure for Cf Lies in Gene Therapy

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cfangel03

Guest
Hi, I have traveled quite a bit and have met many CF doctors, research scientists, and Dr. Beall who is the pres. Ceo of Cff.org.
I just wrote a CF childrens book, Kyle's First Crush, www.kylesfirstcrush.com,
anyway, while writing and promoting this book, I truly believe from everyone that I met that we will see a cure soon.
in the UK right now 200 patients are undergoing Gene Therapy.
Gene Therapy is an inhaled medicine that allows Chromosome 7 to work properly, if all goes well, we may have this here in the U.S. soon.
Keep your heads up! The more I travel, the more I will keep you all informed of what I hear off record!
I will be doing the talk show circuit in the Spring.
My youngest daughter who is 3 has cf. This is important to me too.
Leah Orr
 
C

cfangel03

Guest
Hi, I have traveled quite a bit and have met many CF doctors, research scientists, and Dr. Beall who is the pres. Ceo of Cff.org.
I just wrote a CF childrens book, Kyle's First Crush, www.kylesfirstcrush.com,
anyway, while writing and promoting this book, I truly believe from everyone that I met that we will see a cure soon.
in the UK right now 200 patients are undergoing Gene Therapy.
Gene Therapy is an inhaled medicine that allows Chromosome 7 to work properly, if all goes well, we may have this here in the U.S. soon.
Keep your heads up! The more I travel, the more I will keep you all informed of what I hear off record!
I will be doing the talk show circuit in the Spring.
My youngest daughter who is 3 has cf. This is important to me too.
Leah Orr
 
C

cfangel03

Guest
Hi, I have traveled quite a bit and have met many CF doctors, research scientists, and Dr. Beall who is the pres. Ceo of Cff.org.
I just wrote a CF childrens book, Kyle's First Crush, www.kylesfirstcrush.com,
anyway, while writing and promoting this book, I truly believe from everyone that I met that we will see a cure soon.
in the UK right now 200 patients are undergoing Gene Therapy.
Gene Therapy is an inhaled medicine that allows Chromosome 7 to work properly, if all goes well, we may have this here in the U.S. soon.
Keep your heads up! The more I travel, the more I will keep you all informed of what I hear off record!
I will be doing the talk show circuit in the Spring.
My youngest daughter who is 3 has cf. This is important to me too.
Leah Orr
 
B

BlueTurtle

New member
I believe there will be a cure as well! Hope is a beautiful thing. Thank you for your positive post, your dedication in beating this disease....and your faith!
 
B

BlueTurtle

New member
I believe there will be a cure as well! Hope is a beautiful thing. Thank you for your positive post, your dedication in beating this disease....and your faith!
 
B

BlueTurtle

New member
I believe there will be a cure as well! Hope is a beautiful thing. Thank you for your positive post, your dedication in beating this disease....and your faith!
 
M

Mommafirst

Guest
Leah,

I'm not sure what I believe as far as a cure being probable, but I want to believe its plausible. If not a cure, I do believe that more and more medications will be developed to make CF more manageable, less awful and more of a nuissance than anything else. We have to have hope, have to work for a cure... otherwise we just sit here and allow it to consume us or our families.

I've read about the gene therapy trials in the UK. It does sound promising, but from what I read its quite temporary. Certainly it is a good step in the right direction.

Will you post the schedule for your upcoming talk show circuit appearances? I'd love to catch one. With Rosie O'Donnell holding CF and kids as a cause so near and dear to her heart, wouldn't it be something if you could appear on the View??

Good luck and please let us know.
 
M

Mommafirst

Guest
Leah,

I'm not sure what I believe as far as a cure being probable, but I want to believe its plausible. If not a cure, I do believe that more and more medications will be developed to make CF more manageable, less awful and more of a nuissance than anything else. We have to have hope, have to work for a cure... otherwise we just sit here and allow it to consume us or our families.

I've read about the gene therapy trials in the UK. It does sound promising, but from what I read its quite temporary. Certainly it is a good step in the right direction.

Will you post the schedule for your upcoming talk show circuit appearances? I'd love to catch one. With Rosie O'Donnell holding CF and kids as a cause so near and dear to her heart, wouldn't it be something if you could appear on the View??

Good luck and please let us know.
 
M

Mommafirst

Guest
Leah,

I'm not sure what I believe as far as a cure being probable, but I want to believe its plausible. If not a cure, I do believe that more and more medications will be developed to make CF more manageable, less awful and more of a nuissance than anything else. We have to have hope, have to work for a cure... otherwise we just sit here and allow it to consume us or our families.

I've read about the gene therapy trials in the UK. It does sound promising, but from what I read its quite temporary. Certainly it is a good step in the right direction.

Will you post the schedule for your upcoming talk show circuit appearances? I'd love to catch one. With Rosie O'Donnell holding CF and kids as a cause so near and dear to her heart, wouldn't it be something if you could appear on the View??

Good luck and please let us know.
 
D

Darinsmom

New member
Thank you posting! That is so encouraging! I do believe a cure will be found! We love to hear positive post!! God Bless you an dyour family and for good health!

Laurie
Mom to Darin (9 yrs.old w/ Cf)
Owen (2 yrs.old no cf maybe carrier?)
 
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Darinsmom

New member
Thank you posting! That is so encouraging! I do believe a cure will be found! We love to hear positive post!! God Bless you an dyour family and for good health!

Laurie
Mom to Darin (9 yrs.old w/ Cf)
Owen (2 yrs.old no cf maybe carrier?)
 
D

Darinsmom

New member
Thank you posting! That is so encouraging! I do believe a cure will be found! We love to hear positive post!! God Bless you an dyour family and for good health!

Laurie
Mom to Darin (9 yrs.old w/ Cf)
Owen (2 yrs.old no cf maybe carrier?)
 
S

sweetwhite30

New member
yes and they have just got cpx patent oked and they are starting trials asap as well this is a greta drug will stop cf in its track by making the nucluar part of the defective gene restore itself to norm...yes i love when i hear more incouraging news on top of what i also have learned thanks....
 
S

sweetwhite30

New member
yes and they have just got cpx patent oked and they are starting trials asap as well this is a greta drug will stop cf in its track by making the nucluar part of the defective gene restore itself to norm...yes i love when i hear more incouraging news on top of what i also have learned thanks....
 
S

sweetwhite30

New member
yes and they have just got cpx patent oked and they are starting trials asap as well this is a greta drug will stop cf in its track by making the nucluar part of the defective gene restore itself to norm...yes i love when i hear more incouraging news on top of what i also have learned thanks....
 
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sweetwhite30

New member
and i almost forgot to add they are able to go right to the cf patients to use this drug and i am happy for this and you might want to read up on it as well.....the trials are for 5 and up a.i dupont childrens hospital in delaware does not offer this,but there are hospital in the us doing the trials right now as we speak,sorry for the incorrect info above...had to relook at the site...
 
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sweetwhite30

New member
and i almost forgot to add they are able to go right to the cf patients to use this drug and i am happy for this and you might want to read up on it as well.....the trials are for 5 and up a.i dupont childrens hospital in delaware does not offer this,but there are hospital in the us doing the trials right now as we speak,sorry for the incorrect info above...had to relook at the site...
 
S

sweetwhite30

New member
and i almost forgot to add they are able to go right to the cf patients to use this drug and i am happy for this and you might want to read up on it as well.....the trials are for 5 and up a.i dupont childrens hospital in delaware does not offer this,but there are hospital in the us doing the trials right now as we speak,sorry for the incorrect info above...had to relook at the site...
 
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