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Cystic Fibrosis Foundation Achieves Victory With EPA Restriction of B.

Cepacia Products

BETHESDA, Md., Aug. 20 /PRNewswire/ -- The Cystic Fibrosis Foundation today

announced a triumph on the restriction of products containing bacterial strains

of Burkholderia cepacia (B. cepacia) complex. After years of effort by the CF

Foundation to curb the commercial use of these bacteria in the environment,

the Environmental Protection Agency (EPA) recently canceled the registrations

of all pesticide products containing B. cepacia. It also restricted the use of

these bacteria in products for bioremediation or environmental clean-up.

Exposure to B. cepacia for people with cystic fibrosis (CF) can result in

'cepacia

syndrome' a severe, life-threatening lung infection that is very difficult to

treat. B. cepacia also can be spread among people with CF through

person-to-person contact....

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Rosemary,

Thank you for posting this! What a huge, huge victory! This was first

brought to the CFF's attention several years ago -- all prompted

by discussion on the Cystic-L.

If I recall right, someone posted something about it, then it sort of

dropped off. Several months later, I asked the group if anyone had

heard anything new about preventing a Wisconsin company from using B.

cepacia on crops.

By then, some new people had joined the list, so arms were taken up

again. One was a mom -- (a lawyer I think ) working for the EPA in

Washington, though in a different dept. She'd never heard of this use

of B. cepacia, and she was really upset, outraged, and promised to

start digging to see what she could find.

About that time, the CFF (who used to sometimes lurk on various CF

lists -- remember that, Lenora?) got involved and started lobbying

Congress.

I can't believe it took all these years... but hurray!

Kim

--- ROSEMARY3FOR3wCF@a... wrote:

Cystic Fibrosis Foundation Achieves Victory With EPA Restriction of

B. Cepacia Products

BETHESDA, Md., Aug. 20 /PRNewswire/ -- The Cystic Fibrosis

Foundation today announced a triumph on the restriction of products

containing bacterial strains of Burkholderia cepacia (B. cepacia)

complex. After years of effort by the CF Foundation to curb the

commercial use of these bacteria in the environment, the Environmental

Protection Agency (EPA) recently canceled the registrations of all

pesticide products containing B. cepacia. It also restricted the use

of these bacteria in products for bioremediation or environmental

clean-up. Exposure to B. cepacia for people with cystic fibrosis (CF)

can result in 'cepacia syndrome' a severe, life-threatening lung

infection that is very difficult to treat. B. cepacia also can be

spread among people with CF through person-to-person contact....

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YESSSSSSSSSSSSSS !!! fantastic news, my daughter had B. cepacia, and i

belive it caused her health to decline rapidly. Thank God for small favors

Maureen----->-@

>

>Reply-To: cfparents

>To: cfparents

>Subject: Re: Article B. Cepacia

>Date: Thu, 21 Aug 2003 16:17:47 -0000

>

>Rosemary,

>

>Thank you for posting this! What a huge, huge victory! This was first

>brought to the CFF's attention several years ago -- all prompted

>by discussion on the Cystic-L.

>

>If I recall right, someone posted something about it, then it sort of

>dropped off. Several months later, I asked the group if anyone had

>heard anything new about preventing a Wisconsin company from using B.

>cepacia on crops.

>

>By then, some new people had joined the list, so arms were taken up

>again. One was a mom -- (a lawyer I think ) working for the EPA in

>Washington, though in a different dept. She'd never heard of this use

>of B. cepacia, and she was really upset, outraged, and promised to

>start digging to see what she could find.

>

>About that time, the CFF (who used to sometimes lurk on various CF

>lists -- remember that, Lenora?) got involved and started lobbying

>Congress.

>

>I can't believe it took all these years... but hurray!

>

>Kim

>

>--- ROSEMARY3FOR3wCF@a... wrote:

>Cystic Fibrosis Foundation Achieves Victory With EPA Restriction of

>B. Cepacia Products

>

>BETHESDA, Md., Aug. 20 /PRNewswire/ -- The Cystic Fibrosis

>Foundation today announced a triumph on the restriction of products

>containing bacterial strains of Burkholderia cepacia (B. cepacia)

>complex. After years of effort by the CF Foundation to curb the

>commercial use of these bacteria in the environment, the Environmental

>Protection Agency (EPA) recently canceled the registrations of all

>pesticide products containing B. cepacia. It also restricted the use

>of these bacteria in products for bioremediation or environmental

>clean-up. Exposure to B. cepacia for people with cystic fibrosis (CF)

>can result in 'cepacia syndrome' a severe, life-threatening lung

>infection that is very difficult to treat. B. cepacia also can be

>spread among people with CF through person-to-person contact....

>

>

>

>

>

>

>-------------------------------------------

>The opinions and information exchanged on this list should IN NO WAY

>be construed as medical advice.

>

>PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

>TREATMENTS.

>

>------------------------------------

>

>

>

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I can't believe this took 7 years.

Yes, I remember. We called Pietrasanta at the CFF.

The CFF sent me a copy of the letter they sent to the EPA and they

gave credit to the Internet parents for discovering this and

reporting it to them.

Thank goodness this finally got settled. Wheels sure do turn slow sometimes...

Lenora

>Rosemary,

>

>Thank you for posting this! What a huge, huge victory! This was first

>brought to the CFF's attention several years ago -- all prompted

>by discussion on the Cystic-L.

>

>If I recall right, someone posted something about it, then it sort of

>dropped off. Several months later, I asked the group if anyone had

>heard anything new about preventing a Wisconsin company from using B.

>cepacia on crops.

>

>By then, some new people had joined the list, so arms were taken up

>again. One was a mom -- (a lawyer I think ) working for the EPA in

>Washington, though in a different dept. She'd never heard of this use

>of B. cepacia, and she was really upset, outraged, and promised to

>start digging to see what she could find.

>

>About that time, the CFF (who used to sometimes lurk on various CF

>lists -- remember that, Lenora?) got involved and started lobbying

>Congress.

>

>I can't believe it took all these years... but hurray!

>

>Kim

>

>--- ROSEMARY3FOR3wCF@a... wrote:

>Cystic Fibrosis Foundation Achieves Victory With EPA Restriction of

>B. Cepacia Products

>

>BETHESDA, Md., Aug. 20 /PRNewswire/ -- The Cystic Fibrosis

>Foundation today announced a triumph on the restriction of products

>containing bacterial strains of Burkholderia cepacia (B. cepacia)

>complex. After years of effort by the CF Foundation to curb the

>commercial use of these bacteria in the environment, the Environmental

>Protection Agency (EPA) recently canceled the registrations of all

>pesticide products containing B. cepacia. It also restricted the use

>of these bacteria in products for bioremediation or environmental

>clean-up. Exposure to B. cepacia for people with cystic fibrosis (CF)

>can result in 'cepacia syndrome' a severe, life-threatening lung

>infection that is very difficult to treat. B. cepacia also can be

>spread among people with CF through person-to-person contact....

>

>

>

>

>

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