aside from camp which families are now charged to attend Ccfa does nothing directly to help patients unless you count "support groups" run by volunteers. But don't worry especially in MIchigan they will ask you to fundraise for them. Things went downhill right after last ceo left and new national staff were brought in
Goal to help research and patients is 2nd to none. I will be getting more involved.
Review from Guidestar
As a professional health care provider who deals with abdominal issues daily I not after a more than thorough investigation of CCFA have concluded that in so far as this particular not-for-profit organization, one should avoid any and all support whatsoever for CCFA.
One would think that CCFA would have some kind of index where court decisions involving Crohn's Disease, Colitis, IBD, etc. would be easily obtainable from CCFA. While these conditions meet the definition of a "disability" under the Americans With Disability Act ("ADA") many attempts by me to obtain just a simple breakdown of any court decision mentioned these conditions. While staff at CCFA stated that I am correct in saying that any of these three conditions qualifies the patient for at the very least the requirement that someone else must afford such person a reasonable accommodations under ADA (i.e. an employee must be provided sufficient access to bathroom breaks under the ADA, they could not or would not provide me the same.
Fortunately I have a friend who works at a law firm that is in the process of running a search for such decisions, but if CCFA is such an advocacy group to help people with these diseases then why should they not have a list of these types of decisions where the could provide anyone to them.
In so far as salaries reported elsewhere on this site, why is it that some of these same "executives" (no names mentioned) but of a high rank and of course huge unreal salaries are "deadbeats" who own municipal parking tickets, have state and federal tax liens (meaning they owe taxes), and most importantly may have building/zoning/etc. violations at their own private homes? [YES I CHECKED OUT MANY CCFA staffers from the very top on down] Why is it that they receive sizable salaries and bonuses can't they pay their parking tickets, taxes, etc. and/or otherwise comply with the law??? Well consider me a "whistle blower" as I just gave agencies that deal with these particular issues -- either do your job and enforce such requirements or else I will go public with the information derived from lawful sources by the way!
Lastly I cannot find any example where CCFA has gotten involved in doing any legal work to help enforce any requirements such as frequent breaks. Sure they give a lot of "educational information out" but it would appear that CCFA is all mouth and no action!
I think anyone having any interest in supporting the kinds of causes of CCFA find another entity to support and that no one should support CCFA
My daughter was diagnosed this last year and has had multiple hospital admissions. In the last month I have been diagnosed with lymphocytic colitis. Needless to say it has been a challenging year! My daughter's GI doctor recommended the Crohn's & Colitis Foundation as a resource. Since joining as a member, I am so impressed with the amount of support and resources available. My hope is that next year my daughter will be able to attend the camp for kids.
I am about to donate to a friend's half-marathon benefiting this charity. As I always do, I visited gudestar.org to review the 990 tax form and I disagree with some of the negative comments posted here.
As someone that works for a charity myself, I don't have a problem with the CEO being paid $500,000 since the budget is $50,000,000. THAT IS .01% of the TOTAL BUDGET!!! How many for-profit or even non-profits can say that? How can the person making a negative review say that they understand you have to pay well to hire talented people but then complain that the CEO makes .01% of the total budget. Anyone managing a 50 million dollar budget can make much more than that at most organizations, for-profit or non-profit. I categorically disagree with this reviewer to the point where I felt I had to write this review to defend the charity.
Also, I don't see why someone would get so upset that they get mail from a charity and think that their money is being wasted because they got paper mail rather than email. There are costs associated with fundraising, many older donors do not use email, and studies show that people most likely to give are 50+. As long as nonprofits can keep their fundraising and marketing costs below 15%, then I think they are doing a god job.
CCFA is reading and as an organization that is transparent, ethical and fair, we welcome public scrutiny. We hold ourselves responsible for setting aggressive goals, achieving measurable results and accurately reporting our progress. We are prudent stewards of donors’ funds who conduct our business openly and efficiently. Our National Board of Trustees benchmarks Mr. Geswell's salary against those of other non profits in NYC that are national in scope and size.
Since his joining CCFA as President in May 2006, the organization has funded more research and patient and support services in less than seven years than we have since our inception in 1967. For perspective, from 1975 to 2004, our average research grants were $2.5 million. Between 2004 and 2012, they are $13.2 million and growing. Mr. Geswell is responsible for that success and growth. The programs, staff and aggressive goals and reporting he has put into place, has CCFA on track to continue this rapid growth and ultimately finding cures. For 2012, 80 cents of every dollar supports the mission. Mr. Geswell is the extremely talented, dedicated, and passionate leader that this organization needs. Our board, volunteers and staff support him fully. Please visit the “about us” section on our website (www.ccfa.org) to learn more.
I have supported CCFA for years after undergoing reconstructive surgery for UC back in 2000. I thought I was helping support the fight against this terrible disease and to some extent that's been the case. However, reviewing the information provided by Charity Navigator shows that the President of this small charity, Richard Geswell, was paid a salary of $421,588!
Listen, I actually believe you get what you pay for to some extent and dont think just because its a charity that you shouldnt pay for talent; however, this is egregious and, frankly, looks corrupt. This is (unfortunately) not a large charity, with less than 50 million in annual expenditures, the near half-million dollar annual salary is in line with the Presidents of major universities with billion dollar budgets. I dont mind 6-figure salaries to attract talent, but this seems extremely out of line and makes me suspicious as to if my donations i've been making for years have been used effectively or wasted.
If CCFA is reading, please provide an explanation. I'm terribly disappointed.
Compensation of Leaders (FYE 12/2010)
Richard Geswell $421,588
Review from CharityNavigator
CCFA is a beacon of hope for the 1.4 million Americans living with IBD. They fund invaluable research, provide education and support to many patients and professionals across the country and help spread awareness of these silent diseases. As a patient, I was thrilled to volunteer for the Foundation for many years, and am now blessed to be a part of its staff. When I was diagnosed 28 years ago, there were few options available for treatment. Thanks to CCFA, the options have increased dramatically, and continue to do so in a rapid manner. I am happy to support CCFA with both my time and my resources and know that it will be spent wisely and respectfully.
Review from CharityNavigator
I have sent significant donations to the CCFA yearly with the expectation that my money will go to research and to help people with IBD. I feel that most of the money I send to them is spent on mailings asking me for more money. Haven't they hear of email. It is free. I also think that it serves those that live on the east coast more than anywhere else in the country. This year I will be sending my hard earned money (it is very hard to work a job with IBD) to another charity.
Review from CharityNavigator
I have been involved with the Crohn's and Colitis Foundation of America for over 20 years. My son was diagnosed when he was 14 years old and CCFA was a lifesaver for our family. The last 4 years I have been working as a member of their staff. It is a great joy for me to work for CCFA and help raise the necessary funds in our search for a cure. I have the privilege of working with some of the most dedicated voluteers, staff and incredible medical professionals who have devoted their time and effort to this organization and to our patients and their families. CCFA is rated among the top Health Charities in the United States.