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Re: Dr. Spencer/

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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

>

>

> No Pseudomonas

>

> Talked to Dr. Spencer today and Abby grew no Pa from the washings

> taken in the bronch. The gram neg rods were the Proteus miribilis -

> low pop. and very sensitive. They meet Monday to review literature

> and discuss the Proteus and how to handle it. Spencer took some of

> the fluid to his lab to check neutrophils etc. and noted she had 4%

> in one lung and 10% in the other, meaning she had some inflammation

> but not enough to become overly concerned. We are very thankful

for

> the news.

>

> He still wants to meet the mother of the patient on this list who

has

> a child with the alpha tripsin thing and CF. He's doing an in-

depth

> study on it.

>

> Joe

>

>

>

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