Why I don't care for the CCFA

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JLH
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Why I don't care for the CCFA

Post by JLH »

They don't really care about us or people with other forms of colitis. This is the latest from their site:

"Patient and Professional Services at CCFA is committed to making the lives of all patients and families with Crohn's disease and ulcerative colitis as normal and healthy as possible. We are constantly looking for new ways to reach out and help. We also strive to help families and their physicians to work together to optimize outcomes."
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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tex
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Post by tex »

Joan,

I hear you. They go out of their way to exclude MC, when it comes to spending all that contribution money. That's why, when I made a contribution to Olivia's project, I declined to receive any e-mails from them on their contribution form. I support Olivia's efforts, and probably some of the local chapters have a good attitude, but IMO, the national administration of that organization sucks.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
JLH
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Post by JLH »

I wonder how she is doing now........
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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tex
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Post by tex »

I hope that she's doing well. Her last logon was on March 4, 2011, but her last post was July 21, 2010.

Maybe she will post an update, one of these days.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Stanz
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Post by Stanz »

Hi Joan & Tex,

I've been pretty disappointed in what I've seen from CCFA and finally "unsubscribed".

I think about Olivia a lot. I hope she's doing well.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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MaggieRedwings
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Post by MaggieRedwings »

Morning,

I have also unsubscribed from CCFA since they definitely have no support outside their disease. Makes us orphans!

Would love to hear from Olivia too and hope she is doing fine.

Maggie
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ant
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Post by ant »

I also think about Olivia,

So full of positive spirit. So strong and yet physically not so strong. So full of courage in adversity. So, to me, plane and simple a Hero, Ant
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