When the news came up earlier in the summer about that wholeCarageenan scandal, I made an honest attempt to open up a dialogue, once again, with the Crohn’s and Colitis Foundation of Canada (CCFC). This time, I was greeted with reservations as from their perspective, in the past I had been working to serve my own agenda. I am not completely sure what the perceived agenda is, but when I attempt to engage in an open dialogue and am ignored, I can’t help but feel that I am not the one working to perpetuate this so called ‘agenda’. It seems as though it’s being fed to me.
In lieu of an interview, here is a summary of our recent correspondence (note: I have respected the confidentiality tag on their emails and only included copy from my own).
On June 15th, I sent the following.
I hope all is well with you. It has been some time since we’ve been in touch. I believe our last correspondence was around schedule a meeting which for some reason or another kept being pushed back and then never happened. I am sure everyone over there is rather excited by the amazing amount of funds that were raised at last weekend’s “Gutsy Walk”. I was wondering if it might be possible to schedule an interview with either yourself or ____- this could be done by phone or email if necessary though a phone or in person interview would be preferred.
I look forward to hearing from you,
I received a response requesting more information on what I wanted to discuss and suggesting their new “Chief of Science and Education” might be the right person. I responded back with:
The interview would either be in article format -where I send a list of 5-7 questions or if available, we could do a video based article. The main area of interest is in regards to the areas that are being researched and where the funds are allocated from all the fundraisers.
They then confirmed that the “Chief of Science and Education” would be the person for me to contact and to please send my questions along. Before I was even able to send the questions, I received an email back expressing great concern over my history of openly criticizing the work of the CCFC (you can read the criticism here and here) and wanting to ensure I was “coming to this with an open mind” and not “a predetermined agenda [that I am] looking to validate”.
They did send over an annual report which was filled with a lot of really heart breaking stories from people who continue to suffer with IBD and spend so much of their time and energy raising funds for the CCFC.
I understood her concerns and reservations- it’s her job to protect the organization. If someone was questioning the practices of my businesses, I would want as up front information too. Then again, I try and be upfront right back too. For this reason I offered to do a phone interview and send the questions in advance for review.
One June 26th, I send the following set of questions for review and suggested times to conduct the interview:
1. How much money has been raised to date, for the Crohn’s and Colitis Foundation of Canada?
2. What are the main sources of funding?
3. As it states on your website, most of the funding goes into research projects, what are some of the most exciting discoveries that have been made recently?
4. What is the CCFC’s mandate in terms of the role food/nutrition + lifestyle play in the prognosis of Crohn’s and Colitis?
5. Are there any studies being funded that relate to any potential nutritional connections to the diseases or specific therapeutic foods to help reduce inflammation and/or help heal?
6. What is CCFC’s position on the recent research that came out a few months ago linking high intake of saturated fat from milk sources as a contributing factor for IBS and IBD?
7. Do you believe there is a conflict of interest having major sponsors whose products could aggravate the conditions for which they are funding cures for? (ie. M&M Meat Shops + Ensure)
8. Much of the literature on the CCFC website make statements such as the following: “Crohn’s disease and ulcerative colitis are chronic (lifelong) diseases. As such, you will probably be on some kind of medication for much of your life.” Do you feel this offers an accurate expectation for sufferers?
I was then informed that due to the nature of these questions, the CCFC would need to round up someone with a medical background. I then offered to remove or revise any problematic questions in favour of accelerating the booking of an interview. I received no response. Two weeks later, even after following up twice- still nothing.
My contact did send me a study as an example of what is currently being researched. I look forward to sharing this with you next week.
My goal, or agenda as they call it, is of course not to belittle or offend the CCFC as I know they offer sufferers a community which is a very valuable thing. My goal, as it has been from the start, is to help educate people who are suffering from the very same disease that I had as to how they can work to heal themselves rather than be overwhelmed by the feelings of helplessness and hopelessess that they must wait for a cure to be found outside of themselves.
When the organization, often being the first place people turn to for support when they are diagnosed, is telling people that “Crohn’s disease and ulcerative colitis are chronic (lifelong) diseases [and that sufferers] will probably be on some kind of medication for much of [their] life”– is a incredible disservice to the people who really need the most hope and the widest scope of options. If this statement has proven so false for me, there must be others out there too.
Question Of The Day: If you were me, what would your next plan of action be to open a dialogue with an organization that could potentially help alter the paradigms of a socially and professionally devastating, and potentially terminal disease that inflicts millions of people?
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