Anyone here a member of the CCFA?

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 5/5/2008 7:59 PM (GMT -7)   
Is this a good organization to belong to? Ive looked through there website and it seems they  are "dedicated to finding the cure for Crohn's disease ". I was also suprised that I could not find any information regarding LDN on the site. Did I miss it?
 
 I would think anything published in the The American Journal of Gastroenterology related te CD would be big.
 
 
 
 
 
 

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/5/2008 8:31 PM (GMT -7)   
Hi! I am a member of the CCFA and I do fundraising volunteer work for them as well. There are often arguments on here about whether the CCFA is a good organization and to each their own. They are the largest organization that funds support and research for IBD. Some have issues with the fact that the CCFA is sponsored by some drug companies. It could create a conflict of interest in finding a cure. Others have issue with the fact that more money goes toward patient support than towards funding a cure. But, as far as non-profits go, the CCFA is ranked extremely high on using their money for their charitable purposes and not for administrative costs, salaries, etc. I think they do a lot to raise awareness and I enjoy reading their publications but I don't consider it the be all and end all of IBD. Just like I don't trust everything my doctor says as gospel I don't trust everything they say either. I think it is still important to look everywhere. Everytime there are research break throughs I get an email from the CCFA and I do appreciate that. They also fund a camp for children so that kids with IBD can get together and have a "normal" sleep away camp experience without being embarassed. They chair support groups as well. So, I donate and fundraise because for now I think it is the best we have and I like to stay informed with what they have going on. It is good insight into where the drug companies are looking for future treatment and what research is being funded for a cure. But, like most doctors, they aren't likely to have much on alternative treatments. I come here to find that.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 5/5/2008 8:34 PM (GMT -7)   
The CCFA is a wonderful organization dedicated to finding a cure for IBD. I have belonged for many years. They are a great source of information and guidance. They also have support groups around the country which address the needs of different groups, such as parents of children with IBD, women's issues, etc. And they have bowlathons, walks, etc. to help raise money.

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 5/5/2008 9:46 PM (GMT -7)   
I joined when I got the diagnosis. I'm not sure how I feel about it...I received the magazine and every other page was a drug ad. But it seems like they do some good work and anyways they are the only major organization in the USA, so I will keep on supporting it. Plus you get the "I can't wait" card.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, SCD, Omega-3 (Fish and Flax Oil), Folic Acid, Probiotics, Vitamin E, Psyllium


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/5/2008 9:53 PM (GMT -7)   
I'm a member of the CCFC (canada) and I'm soooooooo glad I became one because I looooove getting the medical journals with all the latest on research and discoveries for IBD...infact, the GI that answers questions in the journal ("Ask the Doctor) happens to be my actual GI.

I got my bracelet that they were selling (with all funds going to research), one of a kind, hand-made, each one unique in some way and I absolutely loooove it.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/5/2008 10:13 PM (GMT -7)   
I belong to the CCFA, but don't hesitate to hold it accountable.  

nightowl
Regular Member


Date Joined May 2008
Total Posts : 21
   Posted 5/5/2008 11:05 PM (GMT -7)   
my doctor"s membership in cfa allows her to give me a year"s membership free> my dentist"s wife has volunteered for them for years and was a godsend when i was diagnosed> took me under her wing and drove me to a huge symposium where i met so many kinds of people who were living with crohn"s and colitis for years> their info tends to be upbeat (here is the nitty gritty) but they are some of the most dedicated< collaborative doctors and group of people out there> esp because so many children are involved< the
energy and passion that they put into their care and research is second to none> they have been extraordinarily helpful and the symposium that i attended assuaged many of my fears as i learned so much there that i could use when i had to ask a surgeon that i was meeting with the next day questions> doctors stood around and answered questions and straight talked with you> everyone"s story was different and it was just good to see so many people out there> they do good work for a good cause> i think they are in no one"s pocket and even more impressively as i said< work together and come together more than other docs in other fields to find a cure whether it"s a big one or a way to make a colonoscopy prep more palatable>

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/6/2008 9:39 AM (GMT -7)   
I was a member and was supposed to start volunteering with them but then the higher ups all resigned and the KY chapter disappeared. The newsletters I received were always 90% about IBD in children, which really doesn't apply to me. So, even though I believe the organization does good, I stopped donating or being a member, since they have nothing in my state.
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


bluemeanies
Veteran Member


Date Joined Jun 2004
Total Posts : 1372
   Posted 5/6/2008 2:35 PM (GMT -7)   
I am a CCFA member also.
 


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 5/6/2008 3:52 PM (GMT -7)   
I'm a member, the teaching conferences have been very helpful!
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, (Multivitamin, Flax Oil, and Omega complex when I remember.)

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