What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Do you really know where your charitable donations go? A few figures

In March 2014 I began a project raising funds for the UK’s biggest Crohn’s and Colitis charity and after 21 months of constant fundraising, in December 2015 we had hit a grand total of £45,000!

I know what you’re thinking “That’s AMAZING” right? Of course I thought the same, until I began to look properly in to where those funds were invested by the charity. For example, looking at the yearend accounts for 2015, I can see that a mere 10% of total donations were invested in to research, and a whopping 39% on staff costs...

My math tells me that if I am to work out by the 2015 accounts percentages, where that £45,000 I worked so hard to raise went it looks like this.
£4,500 went to research
£17,550 went to staff costs

Now you see, it took 1 year and 9 months to raise that £45,000.

Current vacancies at Crohn’s and Colitis UK:
Publications Information manager: £40,000 per annum 
We couldn't even keep up with paying this one staff member

But on the bright side, in those 21 months we did raise enough money to pay this guy for 12 months:
Management accountant: £36,000 - £38,000 per annum
So all is not lost (sarcasm).

If I had known then, what I know now, that whole £45,000 would have gone to research via Cure Crohn’s & Colitis, but alas, I did not look, and I did not know, and I can honestly say that I am gutted about that!

I have since learnt my lesson, and along with Corinne Burns started fundraising project IBDSuperHeroes in January 2016. Our tag line is ‘fighting to cure Crohn’s and Colitis’, and this time we actually are!

Our total is not as grand as the previous project, and currently stands at £11,584, but every single penny of that has gone, or will go to research to ultimately find a cure for Inflammatory Bowel Disease. It has taken us just over 15 months to reach this goal.

The previous project, which is still being run by a few of the ladies I worked with, has now raised a fabulous £61,674, and that has take just over 3 years (37 months), meaning (based on 2015 percentages) around £6,167 of that goes to research and £24,052 on staff costs, and as we’re aware from above, that isn’t even going to a cover ONE persons annual salary...

I work in Marketing, so I completely understand the need to spend money to make money. Without spending money on marketing staff / materials and PR people to get you in the media and event organisers to get your walks in front of the relevant audience, you simply will not become well known enough to be 'raking in' donations. Essentially, these are businesses as much as they are a charity.

Cure Crohn's and Colitis do not pay staff. Everyone that works on their behalf, from the guy that built the website to the lady that does the year-end accounts, does so for free. There is no hefty salary for the big CEO and no marketing budget for a fancy website and ads in magazines, because they want each penny to make a real difference to the lives of those with Crohn's and Colitis. The majority of Cure Crohn's and Colitis' volunteers have been impacted in some way by IBD themselves, so they volunteer their time because they BELIEVE in the cause. 

I guess it’s all down to personal preference, where you want your hard earned money to go. Personally, I want my time and effort to be invested in to research for a cure.

I urge anyone looking to fundraise for Crohn’s Disease and Ulcerative Colitis to PLEASE take some time to think about where your ultimate goal lies and ensure that you are fundraising for a charity which aligns with them.

Check out Cure Crohn's and Colitis:

Over and out.