Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

Where is The Support CCFA?

Hi Adam,

I’m very disappointed about something! I recently applied for a position with the C&CF and then a few days after my interview I received in the mail a letter request donations for the C&CF? Ok I must be on some mailing list! They asked for $100 to $1,000 ok cool but when I started thinking about the foundation and if I wanted to work for it I questioned myself where are the funds to this non-profit organization going?

Before I interviewed with the San Diego District Manager I was hospitalized and racked up some lovely doctor bills (after insurance $6,580).

During the interview with the San Diego District Manager I asked the question how the funds are used! I was shock to know that only 2% are used to assist Crohns & Colitis patients without insurance or jobs. The rest is between salaries and research. OK what the heck are they researching? A cure? I mean really!
The medication they give us is a joke half the time and we pay for that! The steroids from hell…! Why don’t they just invent a colon replacement and call it a day! I might be more emotional about this cure thing then I should be but I just don’t believe that thats where the funds are going! I think the employees of the C&CF are making a CRAP load of money! I seen non-fit companies pay employees large salaries for relaxed BS desk jobs! I have friends with these LUSH/Plush careers getting paid $80,000 to answer the phone Monday – Friday 9 – 6pm for an Executive.

Anyway I asked to pull my application with team Crohns & Colitis for the west cost after I was disappointed in the way the funds are spread out. So instead they keep sending me donation forms! Asking me to join the race for the cure which is a $1,750 per a person donation or fundraiser! So if they find a cure with those high paid employees of the C&CF get paid anymore? Someone is cashing in on a disease that I and many people are faced with everyday! Not joking I feel the C&CF should be provide toilet paper to everyone that has a flare up! I’m up to 1 roll a day without a flare up and it’s not like uncle sam lets us write off toilet paper!

Look if I’m going to donate $100 or $200 I would rather just hand over a check to a fellow Colitis fighter that needs it to pay his or her medical bills, medication or even toilet paper then give it to the C&CF! I’m upset that this non-profit origination is not helping the people without insurance or jobs…It’s finding a cure and really are they?

I mean give me a break!




7 Responses to Where is The Support CCFA?

  1. lee November 21, 2010 at 7:03 pm #

    Hi Rehab77

    I am so happy that you have brought this to the attention of the readers of ihaveuc.com. To often donations are given to what appears to be in the best interest of the people in need only to find out they are helping companies and individuals who profit financially. Bottom line I would like to see someone for C&CF provide specifically how the donations are spent. We may find that the money goes to research which is then turned over to drug companies to make significant profits. If this is the case I would suggest the drug companies spend all the money in research or partner up and split the profits with C&CF. I find it so interesting when you attend a C&CF informational seminar all the drug companies are there with their tables and literature but seldom if ever do you find tables with people suggesting a diet or something that cost very little that may help those suffering from UC. How much of the C&CF research is being spent on diet where there are little profits for drug companies and yet it appears there are significant positive results for some?
    Sorry to be so negative but bottom line I want donations to C&CF to be more transparent on how C&CF is spending our donations.
    Take care,
    Lee

  2. Rose November 21, 2010 at 9:16 pm #

    The number you gave of 2% are not correct. You can go to the ccfa site or directly contact them to ask what % goes to admin fees. There are many charities I will not do work for due to the lack of funds directed to the charity so I totally understand the frustration. One is Make a wish. I used to do a ton for them. However , at least get the correct information and then make your own conclusion as to how you wish to react.

    Also, why do you feel as if you had to participate in membership. You have the option to turn it down. I am a member and I can assure you that no where is a 100.00 fee asked for. I’m almost positive it was 30.00 but again, it’s on the site. Don’t take it so personal. Find out the real facts then make a decision based on that.

    Good luck to you , I hope you have health come your way. Your desire to work there is very positive, and does not go without notice.

    Rose

  3. Reid Bryant Kimball November 21, 2010 at 9:18 pm #

    They are a non-profit and should be making their financial statements public.

  4. Karen November 21, 2010 at 10:33 pm #

    I completely loved this. I totally agree with his emotional outcry. Don’t you think the VERY least they should do is provide free toilet paper for life to everyone who has been diagnosed with crohns or colitis. And Yes let’s see the financial statements.

  5. Gutless Wonder November 22, 2010 at 4:27 am #

    Hi there,

    I cant comment on what they’ve aske you to donate but having had a look at the website it seems to me that their main purpose is research as mentioned throughout their website. They also state that since their inception in 1967 they have donated US$150m towards worldwide reasearch. What is wong with that if they clearly state that ths is their main mission? There are other things that back this up throughout the website including on the pages titled “Our Mision”, “Your Dollars At Work” and “Annual Report”.

    I understand your frustrations and think it is so wonderful that you want to work for one of these companies given you have UC yourself. But honestly, I cant really see anything wrong with this charity.

  6. Tony (UK) November 22, 2010 at 5:01 am #

    After what I found out about ‘the majority’ of these so called charities some years ago, I refuse to make any donations unless I’m absolutely sure the monies going to research or to those its being collected for. I’m in the UK and over here charity is now big business, you name it, there’s a charity for it. Flash advertisements on the TV day and night to make you feel guilty and relieve you of your money. With most of them only a very small percentage goes where its supposed to go, the rest goes on ‘running costs’ which includes ‘unavoidable’ large salaries and bonuses for the administrators and their staff.

  7. Kelly November 22, 2010 at 12:15 pm #

    It is always good to question everything. I run a lot of 5K and other runs which are always for a charity. I try to pick and choose the ones I really like but still I just want to do the run because it’s a fun social event and they make money from my registration. It is true that people who work for non-profits and charities have to make a salary, just like you would have, Rehab77, if you would have been hired. Yes, there might be some extra high salaries or costs for things, these are the things we need to pay attention too and question the company directly. Always question everything! If the non-profit or charity is a good one they will disclose all information and be glad to answer any question. Give them a call and ask away.

    There is an event in my town for MS. The people who suffer from the disease and have their meds paid for from the organization show up to the event and personally thank all of the athletes. It is a very moving experience.

    Also, Rehab 77, you should seriously look into the SCD diet if you haven’t already. You and all of us have the power to be in control of our disease. Change your diet and take control. Only you care the most about your health. We have come to rely on others, especially doctors, to cure us and take care of us. Well, this doesn’t always work. Actually, I personally think it hardly ever works.
    Take care and control of your own health and life. It is amazing what you can do and feel good doing it!

Leave a Reply