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RE: Re: Dr. Spencer/

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Thanks! Maybe he thought there was another one...when we saw him he said

we were the only case he knew of. I've since " met " two others online who

have children with CF and alpha-1.

)O(

mama to , 2yo, w/CF, and , 4yo, no CF

Re: Dr. Spencer/

Yes it is the same Dr. Spencer. He was telling us some about

his research before Abby's bronch and mentioned alpha-1 anti-tripsin

deficiency - that he was doing a study on it. I remembered seeing

one of your posts and told him that I'd heard about one with both CF

and alpha-1. He seemed very interested and I offered to try and

contact you, however that is now pointless since you already see

him. He never even let on that he knew of such a patient - at least

that was the impression I got. We really like him and they say he's

a top-notch researcher. He really encouraged us with his enthusiasm

regarding the gene therapy trial. Good luck to you.

Joe

> Who me? :-) My son has alpha-1-antitrypsin deficiency and CF!

>

> I have been no-mail, just signed back on the list yesterday.

>

> We see a Dr. Spencer in Gainesville...could it be the same one? He

is

> also very interested in both alpha-1 and CF.

>

> Glad to hear about Abby's good results!

> )O(

> mama to , 2yo, w/CF, and , 4yo, no CF

>

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