Monday, July 19, 2010

Email Schmeemail. Converse with me dammit!

For those of you who have been watching my debate about my wish for the CFF to more actively serve and accept the adult CF community, as many of you have written and agree with me that you feel marginalized from the CF community and exhiled to the internet- here is a birds-eye view of my email correspondence today. It is not altogether polite, but I think it gets the point across.


Thank you for your curt reply and for your bolding of *your.* As I can indeed read, I was aware of the use of the word "your," but if I indeed could not read well, perhaps your email response would have been of assistance to me. Please reply if you would like to engage in a more rousing conversation or address my concerns more appropriately. Your cut and paste skills, however, are remarkable.

[I put my real name in the real correspondence, just fyi]

Subject: RE: [TAGGED] RE: Register for Web cast!
Date: Wed, 14 Jul 2010 14:33:04 -0400

Cystic Fibrosis

Hello Beth,


Thank you for contacting the Cystic Fibrosis Foundation's National Office and for sharing your concern.


For more than 50 years, with the support of people like you, we have advanced the search for a cure. Today, thanks to remarkable scientific and medical breakthroughs, people with CF can now expect to live into their 30s, 40s and beyond.

This particular Web cast is tailored to both adults with CF as well as parents of children with CF. We will be featuring experts from both pediatric and adult care. Michael Boyle, M.D., F.C.C.P., Director of the Johns Hopkins Hospital Adult CF Program will be answering questions, among other doctor's working in adult care. This web cast will have "tips on working with your CF care providers to maximize your or your child's CF care."

We also have a Web Cast Library with numerous topics that are of concern to adults with CF:

We hope this information is helpful to you, and if you have any more questions or concerns, please feel free to email us.




Cystic Fibrosis Foundation

National Office
6931 Arlington Road
Bethesda, MD 20814
(800) FIGHT-CF


Sent: Tuesday, July 13, 2010 4:49 PM
To: Cystic Fibrosis Foundation (;
Subject: [TAGGED] RE: Register for Web cast!


Thank you for this email. However, recently I've been in ongoing conversations with CF patients about how/whether the CF Foundation is focused on serving its growing (thriving) adult community- this email is an example of how it does not. The premise of many/ most CFF emails that I receive are that the patient is a child, which is not wholly appropriate. Could there be a webcast with a similar theme for adult patients? Could the wording be altered so that parents are reminded that CF adults not only exist, but are the rule, not the exception?

Thank you,

Subject: Register for Web cast!
Date: Tue, 13 Jul 2010 10:54:54 -0400



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  1. That sounds a lot like a response I would send.

    Get 'em.


  2. *giggle* You know how I feel!

  3. I started commenting, and then it got all long and post-y, so I posted:

    Love you lady!

  4. Don't get into a wrestling match with a pig. You both end up getting dirty but the pig likes it.

  5. Love a nice laugh in the morning. You may already know this, but you'll get nowhere. However, I love the effort.


  6. It is very frustrating. I love to find out about how other adults feel and what not, and it just seems like EVERYTHING is taylored to kids and parents. I would really be interested in how CFers WITH kids do things but there is NO help there.

    Good Luck with your efforts!!!

  7. I love it that my dad and Ronnie have the same advice, one in Dad-Speak, the other in "RSR." haha.

  8. I have another perhaps more appropriate ism. Throw a stone into a pack of dogs and you'll know which one was hit, it's the one that bites you.
    They are very defensive because they know what is said is true. Instead of saying this is new to us and we are going to get better, they defend their inaction.
    In the mean time 2009 vs 2008 shows total assetts -15%, revenues - 4%, services -3% but management services +6%.
    They're fighting for their jobs, and rightfully so. Thus they attack an ardent supporter and advocate. Makes perfect non-sense.


Thanks for commenting! Your comment will be posted ! -CG