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Crohn's & Colitis Foundation of America, Inc.

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Nonprofit Overview

Causes: Digestive Diseases & Disorders, Health, Medical Research, Specifically Named Diseases

Mission: Crohn''s disease and ulcerative colitis are collectively known as inflammatory bowel disease (IBD) because they cause severe inflammation of the intestinal tract, and have common symptoms. The cause remains unknown, and there is no medical cure. The Crohn''s & Colitis Foundation of America was founded in 1967. Its mission is to find a cure for Crohn''s diseasse and ulcerative colitis and to improve the quality of life of children and adults affected by these diseases.

Programs: The Foundation focuses on three mission-critical programs: research, education and support services. Our research program has provided more than $125 million for IDB research, with over $10 million in 2006. We receive more than 220 IBD research grant applications a year, and fund more than 160 projects. Educational workshops and symposia within CCFA?s patient and professional services?together with our scientific journal, Inflammatory Bowel Diseases, enables medical professionals to keep pace with the rapidly growing field of IBD research. Our recently established Information Resource Center provides information, guidance and support by Masters-level health professionals five days a week. Additionally, we offers more than 300 support groups across the United States, advocate to increase federal research funding and promote postive quality of life legislation for IBD patients, and run Camp Oasis, a multi-day summer camp program for young people with Crohn?s disease and ulcerative colitis.

Community Stories

20 Stories from Volunteers, Donors & Supporters

1

Donor

Rating: 1

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

General Member of the Public

Rating: 5

Goal to help research and patients is 2nd to none. I will be getting more involved.

Review from Guidestar

7

Professional with expertise in this field

Rating: 1

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

1

General Member of the Public

Rating: 4

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.

3

Donor

Rating: 5

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.

2

Board Member

Rating: 5

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.

4

Donor

Rating: 1

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

Rhondell D.

Volunteer

Rating: 5

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

4

Professional with expertise in this field

Rating: 1

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

2

Professional with expertise in this field

Rating: 5

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.

1

Professional with expertise in this field

Rating: 5

CCFA is simply invaluable to the IBD community. The Foundation is powered by dedicated staff and tireless volunteers who team up to assure delivery of CCFAs three prong mission of: funding research; providing unbiased and timely information; providing patient and family support. As a pediatric gastroenterologist, I am especially appreciative for CCFAs ever present dedication to patients of all ages and its Pediatric research initiatives that have had and will continue to have a profound positive effect on children and adolescents affected by IBD. It is possible today to envision a world without IBD because of the efforts of CCFA.

Review from CharityNavigator

2

Professional with expertise in this field

Rating: 5

The CCFA is several things to several communities. It is one stop shopping for IBD patients and their families, it is the source for professionals treating IBD and it is a granting agency for physician scientists and PhDs. The CCFA has funded innovative ideas that have translated in novel therapies and more importantly, retain junior scientists (through their focused efforts in funding) within the field of IBD/mucosal immunity/genetics and microbiome.

Review from CharityNavigator

2

Client Served

Rating: 5

When I was first diagnosed with ulcerative colitis, I had never heard of the disease. My doctor referred me to CCFA the day i was diagnosed, and I spent that night and the next several days learning about UC on the CCFA website. Not only did it have the most up-to-date and thorough information on UC/IBD, treatments, and drug therapies, but I gained invaluable information and support from the community forum as well. CCFA was there in those first incredibly scary days when I felt so sick and vulnerable. I realized from CCFA that I wasn't alone.

Review from CharityNavigator

1

Volunteer

Rating: 5

I was referred to CCFA when my son was diagnosed with Crohn's disease six years ago. Initially, I relied on the organization for education and support, then I became involved. I have served on committees both locally and nationally; I am impressed with the high level of commitment of both volunteers and staff. The organization is focused on research as well as patient support; their mission is to find a cure and increase quality of life for their patients. By becoming involved with CCFA, I have not only increased my knowledge of the disease, but also feel like I am actively involved with finding a cure for my son!

Review from CharityNavigator

1

Professional with expertise in this field

Rating: 5

CCFA is an invaluable resource for any patient with IBD and for physicians caring for patients with IBD. For patients, sesrvices such as the Information Resource Center and the webinars are unparalleled. For physicians, the website is loaded with useful tools, such as summaries of commonly used medications and templates for letters to insurers, schools, etc.

Review from CharityNavigator

1

Professional with expertise in this field

Rating: 5

As a physician caring for patients with IBD, the CCFA is the reliable source for unbiased information about IBD and the leading private philanthropic organization supporting IBD research. It is staffed by dedicated professionals, passionate in their commitment to helping find a cure for these challenging chronic diseases. I find the organization very responsive to bith my patients and my own needs.

Review from CharityNavigator

1 Amira S.

Professional with expertise in this field

Rating: 5

CCFA is a GREAT non-profit. My role within CCFA is to fundraise and plan Walks as a celebration for the amount we raise each year. My favorite thing about CCFA is that 80% of our fundraising dollars go directly towards research to find a cure and improve quality of life for patients. 1 in every 200 Americans has either Crohn's or colitis, but because these diseases deal with the intestines and bowels it is often an uncomfortable subject which has made awareness a tougher challenge. CCFA has many programs to provide the support individuals need in managing their condition including an Information Resource Center (1-888-My-Gut-Pain), a free online community (www.ccfacommunity.org) and live chat where Master's level health education professionals answer questions and direct people to resources (www.ccfa.org). We also have many support groups that range from meetings to fun activities all over the US.

2

Donor

Rating: 5

My grandfather, father, brother, cousin, and myself all have Crohn's Disease. Each year we look forward to the CCFA fundraising events in our town. It gives us a chance to hear the success stories of other individuals affected by this disease. Our local CCFA Chapter has given us a place to contribute to what we feel is an eventual cure for this debilitating disease. We enjoy working with the CCFA, taking part in Trivia Nights, Charity Walks, and events. If you or someone you know has a digestive disease I strong recommend finding a local chapter for support and encouragement.

2

Volunteer

Rating: 5

Our daughter was diagnosed with colitis at age 16. During treatment, her pediatric gastroenterologist referred us to the CCFA for medical info about her diseases, how to discuss/handle situations at school, with friends, as a teenager, etc. which was helpful. Little did we know that two years later, at age 18, that our daughter would have a significant flare-up that would result in multiple hospitalizations and surgeries. Upon release from the hospital, we attended a Take Steps Kick-off Event for the CCFA with our daughter. Hearing other young people's stories/struggles with crohn's & colitis, inspired our daughter and our family to form a walk team for their Take Steps Walk event that year. We were thrilled to have support of so many family/friends/medical professional who helped us raise over $2,800. Subsequent to the that first walk, our daughter was "recruited" by CCFA-MidAmerica chapter to speak at some of their events. She jumped "all-in" and helped volunteer at the office, mentor other young patients in the hospital seeking surgery for their colitis, and eventually was elected to their national youth leadership council one year ago. This organization is a fabulous support system to young and old struggling with crohn's or colitis! Our daughter is planning to be a counselor this summer at their Camp Oasis Summer Camp for kids with crohn's or colitis. Their enthusiam to educate people about these diseases and their ability to seek out young leaders, like our daughter, is amazing! They are a very committed group of individuals and are very good stewards of funds raised by supporting research and education.

Review from Guidestar

2

Client Served

Rating: 5

I was diagnosed with Crohn's disease in 1975 at the age of 12 and quickly discovered how little was known about the disease, other than the fact it was "incurable" and that treatment options bordered on nonexistent. In the 35 years since my diagnosis, however, I have watched firsthand as the Crohn's & Colitis Foundation of America (CCFA) has changed that situation and directly improved the lives of people like myself.

CCFA's work makes a dramatic difference in three critical areas: research, education and support.

1. Research: CCFA has spearheaded the effort to establish and fund research into the causes, treatment and eventual cure of Crohn's disease and ulcerative colitis. When I was diagnosed with Crohn's disease in 1975, treatment was limited to major surgery and/or high dose steroids. Since then CCFA has backed research leading to the development of more than 80 new drug treatments, and has played a role in every major scientific breakthrough in Crohn's disease and ulcerative colitis treatment.

2. Education: When I was diagnosed with Crohn's, very few people had even heard of the disease and it was a struggle just to track down basic facts and information. CCFA has worked hard to ensure that medical professionals, newly diagnosed patients, family and friends can quickly and easily find out everything that is known about Crohn's disease and ulcerative colitis. For example, the Foundation's Information Resource Center provides the most current and accurate information to patients, health care professionals and the general public. In addition, local chapters provide in-person education and support.

3. Support: My specific instance of Crohn's disease has been severe, but the support I received from CCFA - and from other individuals with Crohn's whom I met through CCFA - has been critical to my personal and professional success. That support helped me (and others) overcome the challenges associated with Crohn's disease. CCFA's support programs range from traditional support group meetings to Camp Oasis, a camp program where children and teens with Crohn's disease and ulcerative colitis can interact with others in their age group who face similar challenges.

In addition to CCFA's life-improving work in research, eduction and support, there are several operational reasons the Foundation stands out as a great nonprofit:
CCFA is one of only seven health charities to earn an "A" rating from the American Institute of Philanthropy. 83 cents from every dollar is spent on mission critical program services; only 8 cents from every dollar goes to administrative costs. Because I've directly experienced the difference CCFA makes in patients' lives, combined with the exceptionally responsible way the Foundation operates, I choose to donate to CCFA on an ongoing basis. I encourage others to learn more about CCFA, and consider supporting CCFA.
___________________________
Note: Although for this review I could only choose one "role" to describe my involvement with CCFA, over the years I have been a local chapter board member, a volunteer, a donor, and (most importantly) a client served. My experience with CCFA through all of these roles has been an extremely positive one.