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Crohn's & Colitis Foundation

 733 Third Avenue, Suite 510
 New York, NY 10017
[P] (800) 932-2423
[F] --
www.crohnscolitisfoundation.org
http://www.crohnscolitisfoundation.org/chapters/orangecounty/
[email protected]
Michael Osso
FOUNDED: 1967
INCORPORATED: 1966
 Printable 1 Page Summary
 Printable Profile
Organization DBA Crohn's & Colitis Foundation
Former Names Crohn's & Colitis Foundation of America (2017)
Organization received a competitive grant from the community foundation in the past five years No
Employer Identification Number 13-6193105 00000

Summary


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Mission StatementMORE »

To cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.

Mission Statement

To cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.

FinancialsMORE »

Fiscal Year 2019
Projected Expenses $339,106.00
Projected Revenue $799,863.00

ProgramsMORE »

  • Camp Oasis
  • IBD Research Program

Revenue vs. Expense ($000s)

Expense Breakdown 2017 (%)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

For more details regarding the organization's financial information, select the financial tab and review available comments.


Overview


Mission Statement

To cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.

Background Statement

The Crohn's & Colitis Foundation is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn's Disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D. 

Since our founding nearly five decades ago, the Foundation has remained at the forefront of research in Crohn's disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD). Today, we fund cutting-edge studies at major medical institutions, nurture investigators at the early stages of their careers, and finance underdeveloped areas of research. In addition, our professional education workshops and programs, along with our scientific journal, Inflammatory Bowel Diseases, enable medical professionals to keep pace with this rapidly growing field. We are very proud that the National Institutes of Health has commended us for "uniting the research community and strengthening IBD research."

Beyond research, the Foundation is collaborating with healthcare providers to improve IBD quality of care, as well as educating, supporting, and empowering patients and their caregivers through patient-centric education and advocacy programs.


Impact Statement

In 2018,  the Foundation invested $23.8 million in over 250 new and continuing projects at over 100 US and international institutions.

The Foundation  has defined itself by sponsoring the best and brightest researchers over many decades -- seeding the field with studies around the mysteries of IBD. Our cumulative investment of more than $350 million since inception has transformed the clinical management and scientific understanding of Crohn's disease and ulcerative colitis.

Highlights include:

IBD Plexus

- The Foundation continues to grow IBD Plexus, our national-scale, information exchange platform designed to transform how IBD research is conducted and lead us to better treatments and cures faster. It integrates clinical, patient-reported and molecular (genetic and 'omics) data from diverse research initiatives; real world clinical care settings; and patients’ experiences.

- IBD Plexus houses the Foundation's major cohort-based initiatives, including adult and pediatric registries, a biobank, a quality of care program, a patient-powered research network, and a researcher portal.

- The Study of a Prospective Adult Research Cohort with IBD (SPARC IBD) enrolled over 1,300 participants across nine sites, and an additional eight sites will start enrolling in 2019. SPARC IBD aims to identify predictors of response to IBD therapies and relapse to help drive progress towards precision medicine.

- There are over 60 sites contributing biosamples and/or data and seven industry Founding Premier Members who have been trained to leverage IBD Plexus resources.
 
 Environmental Triggers Initiative
 
- Diet, viruses, psychological stress, and tobacco are the initial focus areas being addressed through five Foundation-funded research projects investigating how certain environmental exposures may influence the onset and progression of IBD.
 
 - Recruitment of patients for the two studies focused on psychological stress has begun. One study will look at the effects of early life stress, and another seeks to identify markers of brain-gut communication to indicate those more likely to have a disease flare when exposed to stress.

EDUCATION AND SUPPORT

-Served 1,007,000 constituents through education, support and advocacy programs in 2017, a 25% year-over-year increase.

-The IBD Help Center answered 11,704 inquiries

-237,476 participated in our live and archived education webcasts

-9,041 patients and family members attended live education programs

-Over 8,300 patients and family members participated in in-person support groups

-1,144 pediatric patients attended Camp Oasis across 12 locations

-487 scholarships were awarded to Camp Oasis participants


Needs Statement

Crohn’s disease and ulcerative colitis are serious diseases that drastically affect the lives of both patients and those who care for them. Symptoms include but are not limited to persistent diarrhea, severe abdominal pain, rectal bleeding, fever, malnutrition and weight loss, weakness, fistulas and abscesses, and irritations of the skin, joints, and eyes. Surgery to remove a portion of the bowel and provide an ostomy pouch is common. Some adolescents with Crohn’s or colitis experience delays in physical growth and puberty, causing them to look younger and smaller than their peers. It is not uncommon for patients with IBD to have two dozen bowel movements per day or to take as many as 20 pills every day to treat these devastating conditions.

Going beyond the physical pain endured, psychological illness such as depression often arises. Treatment can cause problems, too. Cortisone-type drugs are effective in controlling, but not curing, inflammation caused by IBD. However, these medications typically cause weight gain, puffy faces, acne, moodiness and restlessness, among other side effects. IBD’s cure, short of radical surgery in the case of ulcerative colitis, is yet to be discovered and evidence unfortunately points to a growing rise in the number of children and teens diagnosed.


CEO Statement

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Board Chair Statement

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Other Ways to Donate/Volunteer

Other ways to donate include online gifts at www.crohnscolitisfoundation.org/donateoc, mailing a check, stock gifts, planned giving, special occasion gifts, giving through an IRA, honor and memorials, matching gifts and bequests.  Volunteer opportunities are varied and can be customized for each person. The Orange County chapter has a volunteer board of directors that guides the fundraising efforts and mission outreach. Additionally, the Crohn's & Colitis Foundation also has a national board of trustees.  Other volunteer opportunities include special event committees for golf, bocce, indoor cycling and fundraising walk, along with camp counselor opportunities, chapter administrative activities, local support groups, legislative advocacy programs.

Geographic Area Served

Central Orange County
West Orange County
South Orange County
North Orange County

The Crohn's & Colitis Foundation serves nationally through our 41 chapters nationwide. The Orange County chapter serves the Orange County area of Southern California.

Organization Categories

  1. Diseases Disorders & Medical Disciplines - Digestive Diseases & Disorders
  2. Medical Research - Digestive Diseases & Disorders Research
  3. Health Care - Patient & Family Support

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Programs


Camp Oasis

A unique program that the Foundation offers is a sleep-away camp experience for children living with IBD. Camp Oasis provides a nurturing and supportive environment equipped to handle their medical needs while allowing them to participate in traditional camp activities, Children with IBD often cannot attend traditional camp as many camps are not equipped to support their physiological and psychosocial needs. Camp Oasis is where youth learn to live independently, while enjoying fishing, archery, hiking, swimming, songs by the campfire, and horseback riding. Camp is staffed with doctors, nurses and mental health specialists as well as trained counselors, many of whom have IBD.

At Camp Oasis, campers are given a chance to connect with others who share their diagnosis and experience the simple joys of childhood which too often are denied because they are sick, in the hospital, or overwhelmed by the side effects of IBD. Camp Oasis is where kids can just be kids rather than patients.

Budget  $90,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Digestive System Diseases
Population Served Children and Youth (0 - 19 years) Other Health/Disability
Program Short-Term Success 
Hold one week of camp after which
-at least 80% of participants will report in post camp survey that Camp Oasis has a life changing impact on them
-at least 70% will report that they feel more independent 
 
Program Long-Term Success 

Camp Oasis supports children and teens living with IBD by providing a traditional camp setting without barriers preventing full participation. A Long term goals are that children will develop new strategies for managing their disease and be more open to discussing their disease with parents, friends and healthcare professionals. 

 


 
Program Success Monitored By 

After each week of camp is held, parents and campers receive a survey to complete to track outcomes.

A logic model, developed by the Foundation's Camp Task Force in 2004, guides camp operations and provides a detailed process for evaluating camp success. Examples of measured short term outcomes include safety, camper enjoyment, new friendship development, and trying new activities. Long-term outcomes include but are not limited to campers being more self-confident, self-reliant, developing new strategies for managing and living with their disease, and feeling more comfortable talking about their diagnosis and symptoms. Age, gender, and camp location are also evaluated within each outcome category.

The Foundation uses a comprehensive assessment process linked directly to the logic model outcomes, including post-camp on-line surveys of campers, parents, and volunteers. Additionally, representatives from the national office conduct site visits and provide feedback, used in collaboration with post-camp reports from those working at the camps, to provide long-term planning.

Examples of Program Success 

This was my 2nd year at Camp Oasis and i didn't think it could get any better. I made some of the best friends of my life and experienced the greatest moments you could ever imagine. Camp Oasis is a blessing for kids with IBD, CD, and/or UC. I'm so privileged to have this experience in my life -a week to unplug and enjoy the clear mountain air. Every year I come back home knowing that I am worth something to so many people and that I have the potential to do great things with my life. Our counselors tell us that if we're ever feeling like we have no place where we have purpose, just to look up at the night sky and choose one star and remember that we are always wanted at Camp Oasis because camp shares the same sky as us. I know most of you reading this won't understand the level of thankfulness I have for what Camp Oasis has done for me but I hope all of you get to have a life changing experience like I did. Thank you to the people who made my week the best it could've ever been. ~ Z


IBD Research Program

The Crohn’s & Colitis Foundation's research program's goals are to identify the causes and ultimately the cures for IBD by proactively building a diverse portfolio of individual and collaborative research projects in high-priority areas and developing the tools needed to expedite IBD research.


Sub-goals include: identify clinically relevant subsets of IBD patients and identify new therapeutic approaches and ways to optimize the effectiveness of existing therapies for IBD; create and sustain the next generation of IBD investigators; advance the methods of quality improvement related to the care of patients with IBD.

In 2018, the Foundation invested over $23 million in over 250 new and continuing research projects in our efforts to accelerate the pace of IBD research. Only 10% of funds allocated to research are allowed to go towards research center overhead costs—a figure much lower than almost all other institutions.

Budget  $33,196,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Digestive System Diseases
Population Served People/Families of People with Health Conditions
Program Short-Term Success 

Microbiome Initiative: Since the program launched, 171 bacterial metabolites have been identified and validated to be associated with and produced by the gut microbiota; 139 of these were studied to pinpoint their role. Metabolites that can control the formation of immune cells with pro and anti-inflammatory properties have been identified.

Genetics Initiative: The team of researchers identified mutations in genes associated with IBD which can cause or protect from disease in experimental models. They are currently exploring these genes as potential targets for discovery of new therapies.

Pediatric RISK Stratification Study: This study follows the largest group of pediatric patients in the history of Crohn's disease studied from the time of diagnosis for complications and response to therapies, while collecting bio-samples (DNA, blood, stool and intestinal biopsies). The Study has led to landmark findings. The study is working to predict and determine individualized treatments.

Program Long-Term Success 

With an investment of over $350 million since our inception in 1967, the Foundation has played a role in every major breakthrough in the treatment and understanding of IBD. Our investment has resulted in $4.1 billion in follow-on funding from the National Institutes of Health. Due to the number of Foundation-funded researchers who go on to receive funding from the National Institutes of Health (NIH), the NIH is dependent on our efforts to seed their future projects. It is as a result of these relationships and the Crohn’s & Colitis Foundation's unparalleled national presence that we are the premier organization with the necessary resources to amplify existing knowledge and increase the number of talented investigators in the field who are working to bring about an end to these debilitating diseases.

Program Success Monitored By 

The Crohn’s & Colitis Foundation is able to fulfill its mission and continue its battle against IBD because of our dedicated board of trustees, our National Scientific Advisory Committee (NSAC) and our leadership. Comprised of leading 42 medical experts around the country with a special interest in IBD, the NSAC has several sub-committees in various areas such as Research Initiatives, Clinical Research Grants, Pediatric Research and Quality of Care. These sub-committees work closely with Foundation staff to advise, guide and evaluate the Foundation's various programs.

Examples of Program Success 

The Crohn's & Colitis Foundation's research programs dramatically increase our understanding of the factors that contribute to IBD and has helped lead to individualized therapies, prevention, and cures.

The Foundation invests in high profile and critically important collaborative projects, targeting areas of science with a high probability of advancing treatment. These idea-driven projects bring together multiple centers and investigators from across the country to work on an agreed upon focus and to share outcomes. Currently the Foundation's research initiatives and their successes include:

IBD Ventures

• The Foundation launched IBD Ventures, previously known as the Entrepreneurial Investing Initiative, with the goals to:

− Accelerate the development of novel products with the potential to address the unmet needs of IBD patients
− Convene and catalyze the best product development and partnership opportunities in IBD 

Genetics Initiative

• Over 240 genetic mutations associated with IBD discovered to date

• Currently exploring these genes as potential targets for discovery of new therapies.


Management


CEO/Executive Director Ms. Addy Lerner
CEO Term Start Feb 2019
CEO Email [email protected]
CEO Experience --

Former CEOs and Terms

Name Start End
Ms. Denise Desmond Jan 2015 Jan 2019

Senior Staff

Name Title Experience/Biography
-- -- --

Awards

Award Awarding Organization Year
-- -- --

Affiliations

Affiliation Year
-- --

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

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Staff Information

Number of Full Time Staff 3
Number of Part Time Staff 0
Number of Volunteers 130
Number of Contract Staff 0
Staff Retention Rate % 100%
Staff Professional Development Yes

Staff Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 100
Hispanic/Latino: 0
Native American/American Indian: 0
Other: --
Other (if specified): --
Gender Female: 100
Male: 0
Not Specified --

Plans & Policies

Organization has Fundraising Plan? Yes
Organization has Strategic Plan? Yes
Years Strategic Plan Considers 3
Management Succession Plan Yes
Organization Policies And Procedures Yes
Business Continuity of Operations Plan Yes

Risk Management Provisions

Nondiscrimination Policy Yes
Whistle Blower Policy Yes
Document Destruction Policy --
Directors and Officers Insurance Policy Yes

Reporting and Evaluations

Management Reports to Board? No
CEO Formal Evaluation and Frequency Yes Annually
Senior Management Formal Evaluation and Frequency Yes Annually
Non Management Formal Evaluation and Frequency Yes Annually

Government Licenses

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CEO Comments

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Foundation Comments

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Governance


Board Chair Mrs. Debbie Margolis
Board Chair Company Affiliation --
Board Chair Term Jan 2015 - Dec 2019
Board Co-Chair --
Board Co-Chair Company Affiliation --
Board Co-Chair Term -

Board Members

Name Company Affiliations Status
Ms. Amber Backhaus Minnesota Automotive Dealers Association --
Mr. Noel Brown Cantor Fitzgerald --
Mr. Jason Burr SoT (Security of Things) --
Mr. Christopher Collette United Health Group --
The Honorable Ander Crenshaw King and Spaulding --
Mr. John Crosson Scientific Imaginetics --
Mr. Alessandro DiNello Flagstar Bank --
Mr. Alex Funderburg Bank of America --
Mr. Vance Gibbs Esq. Kean Miller (Baton Rouge) --
Mr. Ronald Goldsman Crohn's & Colitis Foundation NonVoting
Mrs. Paula Hilbert Synchronoss --
Mrs. Paula Hilbert Synchronoss --
Ms. Michele Kissous-Hunt PA-C Fifth Ave GI --
Mr. Donald Kortz Cushman & Wakefield --
Mr. Joseph Monk State Farm Bank --
Dr. Mark Murray PhD Arbutus Biopharma --
Mrs. Marcy Nanus The Troup Group, LLC --
Dr. Maria Olivia-Hemker Johns Hopkins Children's Center --
Ms. Jennifer O'Neill Deloitte US Financial Services --
Mr. Michael Osso Crohn's & Colitis Foundation NonVoting
Dr. Brent Polk Pediatrics Physician-in-Chief --
Dr. Joel Rosh Goryeb Children's Hospital/Atlantic Health --
Ms. Cynthia Roth West Virginia University Foundation --
Mr. Frank Russomano US HealthConnect Inc. --
Dr. Scott Snapper PhD Brigham and Women's Hospital --
Mr. Andrew Stern Esq. Sidley Austin LLP --
Mr. Eric Stone Velano Vascular --
Mr. Robert Territo Crohn's & Colitis Foundation NonVoting
Mr. Robert Van Pulley World Bank --
Mrs. Jodi Yellen Kleinberg, Kaplan, Wolff & Cohen, P.C. --

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Additional Board Members and Affiliations

Name Company Affiliations Status
-- -- --

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 9
Hispanic/Latino: 1
Native American/American Indian: 0
Other: --
Other (if specified): --
Gender Female: 4
Male: 8
Not Specified 0

Board Information

Board Term Lengths 3
Board Term Limits 2
Board Meeting Attendance % --
Written Board Selection Criteria Yes
Written Conflict Of Interest Policy Yes
Percentage of Monetary Contributions 90%
Percentage of In-Kind Contributions --
Board Orientation Yes

CEO Comments

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Foundation Comments

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Standing Committees

  • Board Development / Board Orientation
  • Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
  • Special Events (Golf Tournament, Walk / Run, Silent Auction, Dinner / Gala)

Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2017 (%)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2017 2016 2015
Total Revenue $1,042,417 $803,079 $438,036
Total Expenses $316,997 $286,208 $137,398

Prior Three Years Revenue Sources

Revenue By Revenue Source
Fiscal Year 2017 2016 2015
Foundation and
Corporation Contributions
$605,192 $416,220 $438,036
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- -- --
Individual Contributions -- -- --
Indirect Public Support $5,936 $4,370 --
Earned Revenue -- $2,860 --
Investment Income, Net of Losses -- -- --
Membership Dues -- -- --
Special Events $431,289 $379,629 --
Revenue In-Kind -- -- --
Other -- -- --

Prior Three Years Expense Allocations

Expense By Type
Fiscal Year 2017 2016 2015
Program Expense $211,075 $190,310 $31,195
Administration Expense $67,389 $61,031 $106,203
Fundraising Expense $38,533 $34,867 --
Payments to Affiliates -- -- --
Total Revenue/Total Expenses 3.29 2.81 3.19
Program Expense/Total Expenses 67% 66% 23%
Fundraising Expense/Contributed Revenue 4% 4% 0%

Prior Three Years Assets and Liabilities

Assets and Liabilities
Fiscal Year 2017 2016 2015
Total Assets $1,980,821 $1,251,325 $731,641
Current Assets $1,980,821 $1,251,325 --
Long-Term Liabilities -- -- --
Current Liabilities $11,400 $7,324 $4,511
Total Net Assets $1,969,421 $1,244,001 $727,130

Short Term Solvency

Fiscal Year 2017 2016 2015
Current Ratio: Current Assets/Current Liabilities 173.76 170.85 0.00

Long Term Solvency

Fiscal Year 2017 2016 2015
Long-term Liabilities/Total Assets 0% 0% 0%
Endowment Value --
Spending Policy --
Percentage(If selected) --
Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal --
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? No

CEO Comments

We currently operate 41 staffed chapters throughout the United States, and file consolidated financial and tax reports. Each Chapter, including the Orange County Chapter of the Foundation, is a fully chartered, subordinate chapter.

The Orange County chapter is part of the national Crohn's & Colitis Foundation audited financial statements. The chapter maintains a local budget for local mission outreach and fundraising.

 Additionally, the Orange County chapter was part of the Los Angeles chapter through FY 2014. In FY 2015, the Orange County chapter became it's own chapter and financial reports reflect that change. 
 

Foundation Comments

Summary financial data is per the Form 990s and consultation with the organization. Foundation/corporate and individual contributions are combined under Foundation and Corporation Contributions.

Documents


Other Documents

Patient Brochure (2019)

Camp Oasis Brochure (2017)

No Other Documents currently available.