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No, it takes two carriers to produce a carrier, the odds with EACH pregnancy

being two carriers, one with neither carrier state nor cf, and one with cf.

In

families, such as mine, where cf women have had kids the odds change to

one in two FOR THEM F THEY MARRY A CARRIER, and ALL THEIR CHIL-

dren will be carriers. There are other diseases, say, Huntington's Chorea

where

it IS true that carrier state can be passed if only one parent is a carrier,

and the

disease itself (50%), but CF follows the pattern outlined above, said the

gene-

ticicist whom I called and who chooses to remain anonymous, I being " just the

patient, " as always, and not a doctor, although I am dragging around an awful

lot of alphabet after my name which does give me a little more direct

knowledge

of how this all works than, as they say in Oregon, " the average bear " has,

said

she, the soul of modesty, as ever,

n Rojaswcf, mom of 3, 1 wcf, " kids " grown; verdict on Mom not in yet!

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My understanding is that if either parent is a carrier the child has a 50%

chance of being a carrier (in other words, only 1 parent needs to be a

carrier for the child to be a carrier.)

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No, I think as I stated in my previous response, only one parent needs to be

a carrier for me, for example, to be a carrier. TWO parents need to be

carriers for CF to be an issue.

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Arghhh !!!!!!!!!!!!!!!!!

I always thought that only one of our parents was a carrier....

This means that all the people of the list just got very lucky not getting

CF ???? that we had ourselves 25 % getting CF ?

does this mean that in my husband's case, who has 2 sisters.. they were just

very lucky that out of 3 kids, none had CF ???

Or am I misinterpreting ???

, mom to Leo 2 wcf

-----Message d'origine-----

De : Mcesana@...

Envoyé : jeudi, 11. janvier 2001 13:47

À : cfparentsegroups

Objet : Re: geneticsresponse

No, it takes two carriers to produce a carrier, the odds with EACH pregnancy

being two carriers, one with neither carrier state nor cf, and one with cf.

In

families, such as mine, where cf women have had kids the odds change to

one in two FOR THEM F THEY MARRY A CARRIER, and ALL THEIR CHIL-

dren will be carriers. There are other diseases, say, Huntington's Chorea

where

it IS true that carrier state can be passed if only one parent is a carrier,

and the

disease itself (50%), but CF follows the pattern outlined above, said the

gene-

ticicist whom I called and who chooses to remain anonymous, I being " just

the

patient, " as always, and not a doctor, although I am dragging around an

awful

lot of alphabet after my name which does give me a little more direct

knowledge

of how this all works than, as they say in Oregon, " the average bear " has,

said

she, the soul of modesty, as ever,

n Rojaswcf, mom of 3, 1 wcf, " kids " grown; verdict on Mom not in yet!

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Sounds right to me.

Re: geneticsresponse

> No, I think as I stated in my previous response, only one parent needs to

be

> a carrier for me, for example, to be a carrier. TWO parents need to be

> carriers for CF to be an issue.

>

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> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

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sounds right to me as well.. so what is n's genetician meaning

???????????

-----Message d'origine-----

De : Lori Devoti

Envoyé : jeudi, 11. janvier 2001 15:09

À : cfparentsegroups

Objet : Re: geneticsresponse

Sounds right to me.

Re: geneticsresponse

> No, I think as I stated in my previous response, only one parent needs to

be

> a carrier for me, for example, to be a carrier. TWO parents need to be

> carriers for CF to be an issue.

>

> ***********************

> This is a secular list.

> ***********************

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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.

>

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

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

>

>

***********************

This is a secular list.

***********************

PLEASE do not post religious emails to the list.

--------------------------------------------------

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.

--------------------------------------------------

Our webpage is at http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

Post message: cfparentsegroups

Subscribe: cfparents-subscribeegroups

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_________________________________________________

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Good 'cause I thought I was going crazy.

other Lori

Re: geneticsresponse

>

>

> > No, I think as I stated in my previous response, only one parent needs

to

> be

> > a carrier for me, for example, to be a carrier. TWO parents need to be

> > carriers for CF to be an issue.

> >

> > ***********************

> > This is a secular list.

> > ***********************

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

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

> >

> >

> > 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.

> >

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

> >

> >

> > Our webpage is at http://www.eohio.net/malbright/cfparents.htm

> >

> > _________________________________________________

> > Post message: cfparentsegroups

> > Subscribe: cfparents-subscribeegroups

> > Unsubscribe: cfparents-unsubscribeegroups

> > List owner: cfparents-owneregroups

> > _________________________________________________

> >

> > WE HAVE A CHAT PAGE!!!

> > /chat/cfparents

> > _________________________________________________

> >

> >

> >

>

>

> ***********************

> This is a secular list.

> ***********************

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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.

>

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

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

>

>

>

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My sister-in-law is a carrier but her husband isnt and their daughter is

also a carrier. When we did our IVF work up the scientist/genetist said 1

parent who is a carrier can pass on the carrier status to the child, but two

are needed for the disease to be passed on.

RE: geneticsresponse

> Arghhh !!!!!!!!!!!!!!!!!

>

> I always thought that only one of our parents was a carrier....

> This means that all the people of the list just got very lucky not getting

> CF ???? that we had ourselves 25 % getting CF ?

> does this mean that in my husband's case, who has 2 sisters.. they were

just

> very lucky that out of 3 kids, none had CF ???

> Or am I misinterpreting ???

>

> , mom to Leo 2 wcf

>

> -----Message d'origine-----

> De : Mcesana@...

> Envoyé : jeudi, 11. janvier 2001 13:47

> À : cfparentsegroups

> Objet : Re: geneticsresponse

>

>

> No, it takes two carriers to produce a carrier, the odds with EACH

pregnancy

> being two carriers, one with neither carrier state nor cf, and one with

cf.

> In

> families, such as mine, where cf women have had kids the odds change to

> one in two FOR THEM F THEY MARRY A CARRIER, and ALL THEIR CHIL-

> dren will be carriers. There are other diseases, say, Huntington's Chorea

> where

> it IS true that carrier state can be passed if only one parent is a

carrier,

> and the

> disease itself (50%), but CF follows the pattern outlined above, said the

> gene-

> ticicist whom I called and who chooses to remain anonymous, I being " just

> the

> patient, " as always, and not a doctor, although I am dragging around an

> awful

> lot of alphabet after my name which does give me a little more direct

> knowledge

> of how this all works than, as they say in Oregon, " the average bear " has,

> said

> she, the soul of modesty, as ever,

> n Rojaswcf, mom of 3, 1 wcf, " kids " grown; verdict on Mom not in yet!

>

>

>

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In my understanding it takes only one parent carrier for the child to be a

carrier (50%).

Liesbeth, mom to 2wcf and Kasper 1wocf

> RE: geneticsresponse

>

> Arghhh !!!!!!!!!!!!!!!!!

>

> I always thought that only one of our parents was a carrier....

> This means that all the people of the list just got very lucky not getting

> CF ???? that we had ourselves 25 % getting CF ?

> does this mean that in my husband's case, who has 2 sisters.. they were

> just

> very lucky that out of 3 kids, none had CF ???

> Or am I misinterpreting ???

>

> , mom to Leo 2 wcf

>

> -----Message d'origine-----

> De : Mcesana@...

> Envoyé : jeudi, 11. janvier 2001 13:47

> À : cfparentsegroups

> Objet : Re: geneticsresponse

>

>

> No, it takes two carriers to produce a carrier, the odds with EACH

> pregnancy

> being two carriers, one with neither carrier state nor cf, and one with

> cf.

> In

> families, such as mine, where cf women have had kids the odds change to

> one in two FOR THEM F THEY MARRY A CARRIER, and ALL THEIR CHIL-

> dren will be carriers. There are other diseases, say, Huntington's Chorea

> where

> it IS true that carrier state can be passed if only one parent is a

> carrier,

> and the

> disease itself (50%), but CF follows the pattern outlined above, said the

> gene-

> ticicist whom I called and who chooses to remain anonymous, I being " just

> the

> patient, " as always, and not a doctor, although I am dragging around an

> awful

> lot of alphabet after my name which does give me a little more direct

> knowledge

> of how this all works than, as they say in Oregon, " the average bear " has,

> said

> she, the soul of modesty, as ever,

> n Rojaswcf, mom of 3, 1 wcf, " kids " grown; verdict on Mom not in yet!

>

>

>

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No, you had 50% of a chance of NOT getting cf, 25% of getting it, and 25% of

being neither a carrier nor a cfer: Like this:

Neither cf nor cf carrier = 50% with each pregnancy, that's EACH

cf person = 25% " " " "

"

It takes two carrier parrents to produce the above odds with EACH pregnancy;

the odds don't change with each pregnancy

Each parent MUST be a carrier to produce the above statistices; just think how

many more of us there out there who are either "

carriers or

unidentified cfers!

n Rojas: data from Cystic Fibrosis Foundation in USA and

Cystic Fibrosis Trust in the United

Kingdom

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Should, as is my case, one of the parents be a person with cf, and the other

a cf carrier, the odds thange: cf: one in two

carrier : all

sources: same as in previous E-mail

Recommendation: contact the nearest office of the American or Canadian Cystic

Fibrosis Foundation for this, the Cystic Fibrosis Trust in the Uk, or

equivalent in

your country,

n Rojas who will sit corrected if proven wrong and would like to see the

new data, please, as well as the source cited

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Okay, so I may have to eat this one, but four major universities and the CFF

tell me

the following:

One carrier and one carrier=the following:

1)with EACH pregnancy, the following statistical liklihood: two carriers

1cf

1 non of the above

One of the things that has caused rancour in families is that parents blame

each

family for the cf child, when in fact, each parent is a carrier; each of

their parents

had to be carriers for them to be carriers, and so on, as this is a very old

gene.

There are obviously many carriers who do not produce children with cf as the

number of carriers is likely to be twice the rate as that for either cf or

non cf and

the cf may not be diagnosed, nor the carrier state--until recently.

However, if, as is the case with me, I have cf and I, as I did, married a

carrier, the

odds WITH EACH PREGNANCY THEN CHANGE TO: 50% for cf and 100% for

carriers and none with neither cf nor carrier state.

My sources are: Stanford, UCSF, California Pacific, and the University of

Michigan,

as well as the CF Foundation itself. If you still doubt this, call them, and

I will

cease posting. You can also call CFRI, but they will in all liklihood refer

you to me.

You could call Roundtable/USACFA or IACFA, all of which have E-mail addresses

listed in them. If you are in ia, call the Reaching Out Foundation,

headed by

Burroughs who is a transplant survivor! She and Barbara Palys of IACFA

are

probably the most reliable sources. Happy hunting,

n Rojas who spends her life hunting!

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simple: each parent must be a carrier to produce the following odds with each

pregnancy, and all cf persons, with RARE genetic anomoytic exceptions:

1) both parents must be4 carriers to produce a child with cf

2) with each pregnancy by those same parents the odds of having a cf child

are:

two carriers, one noncf and non cf carrier; one cf child

3)If one parent has cf and marries or partners with a carrier, the odds

change to:

1)with each pregnancy, one of two will have cf AND all will be carriers

Forget all my sources: call the Foundation (CFF) in your area; they will

explain it to

you, OR ask your cf physician who will explain it to you. Happy hunting!

n Rojas

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You thought YOU were going crazy! Bev Donelson of the CF pharmacy posted

this morning that each parent had to be a carrier for a cf kid to result:

1) odds at each pregnancy are : 2 carriers; 1 cfer; 1 neither

2) If a parent, usually the mom , has cf, the odds change to 50% liklihood of

a cf

child and all the children will be carriers--my situation.

The following institutions supplied this information:

Stanford University

The University of California at San Francisco

The University of Michigan

California Pacific University at San Francisco

and just for kicks,

The University of North Carolina as well as nine others.

If in doubt, call your local Cystic Fibrosis Office; they will tell you what

I have told

you; if that isn't enough, ask the director of the cf center you attend!

Happy Hunting!

n Rojas

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n, I think the confusion is the wording. It sounds like you are saying

that:

Since I have a child with CF, we know that my husband and I are both

carriers, and my mom and dad and my husbands my and dad (both sets of cf

persons grandparents) are ALL carriers.

I don't think that's what you are meaning to say is it?

When really we know that my mom (grandma) is a carrier and my dad (grandpa)

isn't. Now we don't know about my husbands parents because they have chosen

not to be tested, but either his mom or his dad is a carrier and passed on

the gene.

yvonne price

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Hi, ; I think they say that because so many alelles have not been found,

but

it is not what we are being told here.

n Rojas who is sorry to cause so much controversy, but glad that there

is so

much interest. . . . . . .

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Call your local Cystic Fibrosis Group, Foundation, Society, or Trust. All my

research gives me what I have posted or I wouldn't have posted. Solid

information

to the contrary will be welcomed and accepted and reposted.

n Rojas vwc, mom of 3, 1 w cf, " kids " grown and doing well, Mom

exhausted!

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Hi, I went to your sights, Lori, including the dogbreeding one, and if that's

what

Harvard says, that's what Harvard says, but UNC andf Stanford et. al. still

say

that CF follows a Mendelian pattern and it takes two parents to produce a cf

child; those whom I have talked with at the institutions mentioned in my

posts do NOT believe that one parent can pass on one recessive gene, but they

could be

wrong. All I guess I can do is quote my sources and point out that all

identified persons with cf in my family ultimately proved to have parents

each with one

alelle. And we have more cfers, more carriers than one would ever have

expected.

If you are right, there are more than one in 23 carriers out there and the

odds of cf

persons, child or adult going unidentified is even greater than we

thought--which is

ultimately the point. Let's find all cfers whom we can and help them--no

matter how

they got it!

n Rojas

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Lori, not quite; the odds if two carriers have a pregnancy are for two, not

one

carrier, one naiether, and one cf, but these are only odds. Red hair is very

different.

With cf, we are definitely talking about a recessive gene. I'm doing some

further re-

search, but so far every university I have contacted has given me the same

data,

Iincluding the same data, that one carrier cannot pass on carrier state,

though they

may all be wrong. When the new data arrives, I ahave sworn to publish it,

and to

sit corrected, to boot--honest. Most recessive genes are not passed by a

single

gne, not just cf--but we will see, though I haven't determined the prize yet!

n Rojas

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CORRECT!!!!!!!!!!!!!!!!!!

:):):) GRDNMOMBEV

Re: geneticsresponse

n, I think the confusion is the wording. It

sounds like you are saying

that:

Since I have a child with CF, we know that my

husband and I are both

carriers, and my mom and dad and my husbands my

and dad (both sets of cf

persons grandparents) are ALL carriers.

I don't think that's what you are meaning to say

is it?

When really we know that my mom (grandma) is a

carrier and my dad (grandpa)

isn't. Now we don't know about my husbands

parents because they have chosen

not to be tested, but either his mom or his dad is

a carrier and passed on

the gene.

yvonne price

***********************

This is a secular list.

***********************

PLEASE do not post religious emails to the list.

--------------------------------------------------

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.

--------------------------------------------------

Our webpage is at

http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

Post message: cfparentsegroups

Subscribe: cfparents-subscribeegroups

Unsubscribe: cfparents-unsubscribeegroups

List owner: cfparents-owneregroups

_________________________________________________

WE HAVE A CHAT PAGE!!!

/chat/cfparents

_________________________________________________

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Splitting hairs, but I think this might be part of the confusion - should

say 75% chance of NOT getting CF (50% chance on being a carrier with one

mutation from father OR mother, 25% chance of not getting a mutation from

either parent so not even being a carrier), 25% chance of getting CF (a

mutation from each parent).

To me being a carrier does not equal having CF.

Lori

Re: geneticsresponse

> No, you had 50% of a chance of NOT getting cf, 25% of getting it, and 25%

of

> being neither a carrier nor a cfer: Like this:

>

> Neither cf nor cf carrier = 50% with each pregnancy, that's EACH

> cf person = 25% " " " "

> "

>

> It takes two carrier parrents to produce the above odds with EACH

pregnancy;

> the odds don't change with each pregnancy

>

> Each parent MUST be a carrier to produce the above statistices; just think

how

> many more of us there out there who are either "

>

> carriers or

> unidentified cfers!

>

> n Rojas: data from Cystic Fibrosis Foundation in USA and

> Cystic Fibrosis Trust in the United

> Kingdom

>

>

>

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This part all sounds right. I think where the difference of opinion is in

both parents having to have a CF mutation to produce another carrier. That

just doesn't make any sense.

Here is why: if a person is a CF carrier and mates with another CF carrier -

they can each pass along their CF mutation (baby with CF) or neither can

pass along their CF mutation (baby not even a carrier) or just one of them

can pass along their CF mutation (baby is a carrier). If a CF carrier mates

with a none CF carrier - then the baby can still get one CF mutation from

the CF carrier parent and also be a carrier OR the baby could receive no CF

mutations and not even be a carrier. (But they can still get the one

mutation and this makes them a carrier)

It isn't necessary for both parents to be carriers to produce another

carrier - It is necessary for both parents to be carriers for CF to be

present, because the CF mutation is a recessive gene and the normal gene

will over ride the CF mutation.

The reason CF mutations can go along for generations without appearing is

the same reason red hair can seem to all of a sudden pop up in a family. It

takes two recessive genes for the disease or red hair to appear, but one

copy of the gene has been being passed down for generations by a parent who

carries it.

Does this make sense?

Lori

Re: geneticsresponse

> simple: each parent must be a carrier to produce the following odds with

each

> pregnancy, and all cf persons, with RARE genetic anomoytic exceptions:

>

> 1) both parents must be4 carriers to produce a child with cf

> 2) with each pregnancy by those same parents the odds of having a cf

child

> are:

> two carriers, one noncf and non cf carrier; one cf child

> 3)If one parent has cf and marries or partners with a carrier, the odds

> change to:

> 1)with each pregnancy, one of two will have cf AND all will be carriers

> Forget all my sources: call the Foundation (CFF) in your area; they will

> explain it to

> you, OR ask your cf physician who will explain it to you. Happy hunting!

> n Rojas

>

>

>

>

>

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n, you seem like a person with a great sense of humor or I wouldn't say

this. But I find it amusing that you say the CFRI would refer a caller to

you for genetic information. True? I don't doubt your sources nor most of

your statistics. I think the only thing that somehow is getting lost in the

translation is the fact that only one grandparent of a child with CF is

NECESSARILY a carrier. They might both be, but probably not. Maybe this is

what you meant to say? In any event, we certainly appreciate your time and

research.

Lori

Re: geneticsresponse

> Okay, so I may have to eat this one, but four major universities and the

CFF

> tell me

> the following:

>

> One carrier and one carrier=the following:

> 1)with EACH pregnancy, the following statistical liklihood: two carriers

>

> 1cf

>

> 1 non of the above

> One of the things that has caused rancour in families is that parents

blame

> each

> family for the cf child, when in fact, each parent is a carrier; each of

> their parents

> had to be carriers for them to be carriers, and so on, as this is a very

old

> gene.

> There are obviously many carriers who do not produce children with cf as

the

> number of carriers is likely to be twice the rate as that for either cf or

> non cf and

> the cf may not be diagnosed, nor the carrier state--until recently.

>

> However, if, as is the case with me, I have cf and I, as I did, married a

> carrier, the

> odds WITH EACH PREGNANCY THEN CHANGE TO: 50% for cf and 100% for

> carriers and none with neither cf nor carrier state.

>

> My sources are: Stanford, UCSF, California Pacific, and the University of

> Michigan,

> as well as the CF Foundation itself. If you still doubt this, call them,

and

> I will

> cease posting. You can also call CFRI, but they will in all liklihood

refer

> you to me.

> You could call Roundtable/USACFA or IACFA, all of which have E-mail

addresses

> listed in them. If you are in ia, call the Reaching Out Foundation,

> headed by

> Burroughs who is a transplant survivor! She and Barbara Palys of

IACFA

> are

> probably the most reliable sources. Happy hunting,

>

> n Rojas who spends her life hunting!

>

>

>

>

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