Cure for Cf Lies in Gene Therapy

C

copolla

New member
Dr. Beall will be speaking in Boston, on Feb 10th. I look forward to hearing about the new drugs on the market. I know he is pushing for Gene Therapy to start soon in the USA
 
C

copolla

New member
Dr. Beall will be speaking in Boston, on Feb 10th. I look forward to hearing about the new drugs on the market. I know he is pushing for Gene Therapy to start soon in the USA
 
A

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>copolla</b></i>

Dr. Beall will be speaking in Boston, on Feb 10th. I look forward to hearing about the new drugs on the market. I know he is pushing for Gene Therapy to start soon in the USA</end quote></div>

For anyone who attends and hears what Dr. Beall has to say . . .Please share what you learn with us!!!
 
A

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>copolla</b></i>

Dr. Beall will be speaking in Boston, on Feb 10th. I look forward to hearing about the new drugs on the market. I know he is pushing for Gene Therapy to start soon in the USA</end quote></div>

For anyone who attends and hears what Dr. Beall has to say . . .Please share what you learn with us!!!
 
A

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>copolla</b></i>

Dr. Beall will be speaking in Boston, on Feb 10th. I look forward to hearing about the new drugs on the market. I know he is pushing for Gene Therapy to start soon in the USA</end quote></div>

For anyone who attends and hears what Dr. Beall has to say . . .Please share what you learn with us!!!
 
C

cfangel03

Guest
I just recently heard Dr. Beall Speak last March in Washington. D.C., but he will be in Boston on Feb 10th, Saturday. Westin Boston Waterfront
425 Summer Street.
Reception at 6pm, followed by dinner/desert. Tickets are $65.
Tickets purchased on line or thru CF Foundation office in Boston 508-655-6000
Westin Boston Hotel offering rates for overnight at $169 617-532-4856.
Teri Wait from the Boston CF Office is handling event.
If anybody goes, say hello to my mom, she will be there selling my book. She is the Illustrator. Josephine Lepore. (Grandma Josie)

If you can't go, my mom will let me know what was discussed.

Leah Orr
 
C

cfangel03

Guest
I just recently heard Dr. Beall Speak last March in Washington. D.C., but he will be in Boston on Feb 10th, Saturday. Westin Boston Waterfront
425 Summer Street.
Reception at 6pm, followed by dinner/desert. Tickets are $65.
Tickets purchased on line or thru CF Foundation office in Boston 508-655-6000
Westin Boston Hotel offering rates for overnight at $169 617-532-4856.
Teri Wait from the Boston CF Office is handling event.
If anybody goes, say hello to my mom, she will be there selling my book. She is the Illustrator. Josephine Lepore. (Grandma Josie)

If you can't go, my mom will let me know what was discussed.

Leah Orr
 
C

cfangel03

Guest
I just recently heard Dr. Beall Speak last March in Washington. D.C., but he will be in Boston on Feb 10th, Saturday. Westin Boston Waterfront
425 Summer Street.
Reception at 6pm, followed by dinner/desert. Tickets are $65.
Tickets purchased on line or thru CF Foundation office in Boston 508-655-6000
Westin Boston Hotel offering rates for overnight at $169 617-532-4856.
Teri Wait from the Boston CF Office is handling event.
If anybody goes, say hello to my mom, she will be there selling my book. She is the Illustrator. Josephine Lepore. (Grandma Josie)

If you can't go, my mom will let me know what was discussed.

Leah Orr
 
H

hopefullmom

New member
Hi Leah, It is wonderful to hear how encouraged you are about the new drugs. I also think things are moving in the right direction. I try to look at the positive and think that we are all pulling for cures together as moms and dads. Have you heard any new on the ptc124 trials with the X mutations? I am going to Virginia on March the 9th for a conference, I hope I see your book there. Mom of Maci 4wcf dx at 3 after getting sick and never getting over it. Good luck with the book!!!!
 
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hopefullmom

New member
Hi Leah, It is wonderful to hear how encouraged you are about the new drugs. I also think things are moving in the right direction. I try to look at the positive and think that we are all pulling for cures together as moms and dads. Have you heard any new on the ptc124 trials with the X mutations? I am going to Virginia on March the 9th for a conference, I hope I see your book there. Mom of Maci 4wcf dx at 3 after getting sick and never getting over it. Good luck with the book!!!!
 
H

hopefullmom

New member
Hi Leah, It is wonderful to hear how encouraged you are about the new drugs. I also think things are moving in the right direction. I try to look at the positive and think that we are all pulling for cures together as moms and dads. Have you heard any new on the ptc124 trials with the X mutations? I am going to Virginia on March the 9th for a conference, I hope I see your book there. Mom of Maci 4wcf dx at 3 after getting sick and never getting over it. Good luck with the book!!!!
 
B

biz

New member
Hi Leah, thank you for the site to go onto to read for myself. truly when i read it, i have tears in my eyes. just knowing that an easier way of living with cf is possible and the pain and suffering may one day, for my son not be a part of his daily life. i pray for this to happen. when i read this article and a lot of other articles about advancements on cf i am going to have to wait a decade or more before my son can benefit from it. i wish there was something being done for the little ones so when a decade or more does go by, they dont have damage already done when it could have been revented...just a thought coming from a terrified mom. thank you though for your messages.



Elizabeth
proud mom of Aidan 13 months w/cf
 
B

biz

New member
Hi Leah, thank you for the site to go onto to read for myself. truly when i read it, i have tears in my eyes. just knowing that an easier way of living with cf is possible and the pain and suffering may one day, for my son not be a part of his daily life. i pray for this to happen. when i read this article and a lot of other articles about advancements on cf i am going to have to wait a decade or more before my son can benefit from it. i wish there was something being done for the little ones so when a decade or more does go by, they dont have damage already done when it could have been revented...just a thought coming from a terrified mom. thank you though for your messages.



Elizabeth
proud mom of Aidan 13 months w/cf
 
B

biz

New member
Hi Leah, thank you for the site to go onto to read for myself. truly when i read it, i have tears in my eyes. just knowing that an easier way of living with cf is possible and the pain and suffering may one day, for my son not be a part of his daily life. i pray for this to happen. when i read this article and a lot of other articles about advancements on cf i am going to have to wait a decade or more before my son can benefit from it. i wish there was something being done for the little ones so when a decade or more does go by, they dont have damage already done when it could have been revented...just a thought coming from a terrified mom. thank you though for your messages.



Elizabeth
proud mom of Aidan 13 months w/cf
 
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