Money for cure

CCFA

Sorry but what is CCFa

Crohn's and Colitis Foundation of America

Just one simple question.
What are they working with that money?

This is not good enough good for anybody of us
Btw I have no symptoms.

m8, I want to see a cure as much as anybody, but I don't think we will see one in our lifetimes. IBD is too insanely complicated. I think we need to uncover more info, but the problem is we don't know what info it is we need to find out: it's all stumbling in the dark, bit by incremental bit.

People, do you have hope with Qu biologics SSI vaccine and Map Vaccine?

Poop will never be a cure. The results have shown again and again that only some benefit from FT, mostly those who have also had a c-diff infection, or those who got UC triggered after massive antibiotics.

Poop study will lead to advanced probiotics, possibly individualized, that may become one of the 1st line therapies.

CCFA does funnel money into research, as well as into support for patients and families. They also funnel results out to public. Other than supporting science, The National Institute of Health, The National Science Foundation, and other organs or research, CCFA is not a bad way to send some money.

We should not confuse steady progress on an enormous task as stumbling around in the dark. Immunology, autoimmune disease, and the gut microbiome are vigorous fields of research.

Honestly, if you want to get the most bang for your buck, find a researcher who you believe is doing good work and donate to the lab. Believe me, they will appreciate any amount of money they can get. If you donate to CCFA/CCFC etc, only a portion of your donation goes to research.

And to people down playing the role of researchers in academic institutions, youve obviously never worked in a lab setting...we arent exactly sitting on our assess or holding a cure from the public. We want a cure almost as much as the UC community

Ok I'm done with this topic. Things like these get on my nerves and bring out the worst in me. For an organization that has existed for so long, the CCFA dropped the ball big time. ZERO progress in the war on IBD (or cancer for that matter). You want progress, explore the microbial realm and how environmental stimuli modify it (diet, lifestyle, antibiotics, stress).

Peace out.

I really don't see how you can say the "results are misleading" when the results for positive responses for UC from FMT's are misleading.


I've been involved with and know how many charities work. Most all work roughly the same, with a fairly small bottom line percentage actually usable for the purpose intended after expenses are paid. Of course some have better bottom lines than others and some are basically just outright scams. There are very few charities where much of the money is able to go for the intended purpose. That's just the way it is. There are rating agencies, the BBB may be one, which evaluate particular charities. I have no idea how well the CCFA is rated.

I'd only donate to IBD charities if the money were used to help those suffering directly (ie. those unable to work were bought groceries, furniture etc.). After all my experiences with doctors and medicines, I thoroughly don't trust the medical establishment anymore. I only see doctors now because it is legislated that we need a doctor's prescription in order to get symptom relieving medications. Doctors are absolutely useless in my books.

As for poo being a cure, I don't think so. I don't mean to sound rude but I've been through 2 courses of FMTs (at Dr. Borody's clinic and done at home using different donor stool) only to make my symptoms worse (Thomas' treatment made me worse, my DIY treatment had no effect). I am resentful that the CDD almost guaranteed a relief of symptoms only to have them become worse after treatment and after telling them this, they have no answers and I am left off in an even worse position. I repeat, this was by the, so called famous 'Thomas Borody'. In the end, the vast majority of doctors are out for money.