Re: Family Day at Columbia CF Center

October 19, 2002

What is family day?? Kids too..........sounds like a breeding

ground......Gosh, I am so pessimistic....

Have fun!

Rosemary in New York with 3 children with CF - they are 12, 9.8, 5.9...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

October 19, 2002

Hi Rosemary and everyone,

No kids allowed at Family Day, thank goodness, just parents. Columbia is

very concerned about infection control.

It was an interesting day - my first 'family day' at any of the 4 centers my

son's been seen at. (Yes, sometimes it feels as if we're North American

center specialists, we've moved around the country so much recently...)

You've all probably been to these events, but this was my first one, and I

was touched to walk into a room full of other CF parents and know that they

go through the same struggles that we do every day - the work, the worry,

the angst and the triumphs. I've hardly met any other CF parents - this

group and the cystic-l group are my main experience of others in my

situation.

Anyway, Family Day consisted of a presentation by the center's main doctor,

also presentations by a researcher, an insurance expert and Boomer Esasion

talking about being a CF dad. They discussed a number of subjects including

the CF Registry, the Azithromycin study, hygiene and infection control and

dealing with insurance companies. Some of it was really useful.

I have to admit I got kindof cynical and cranky at the presentation of the

researcher who worked on the Azithromycin study here in the US. She

certainly took what felt like an inappropriate amount of credit for the

therapy getting accepted, but I've read about how resistant the CFF was to

Zithro, and the amazing work done by parents to overcome the scepticism and

get a study started. Typical bit of amnesia there. Still, at least now that

the study is done the benefits have been proven and everyone can get

started.

All the best,

Maz mother of Charlie 3.5 wcf and very naughty.

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