Hereditary Colon Cancer Foundation

aka Hereditary Colon Cancer Foundation   |   Portland , OR

Mission

The Hereditary Colon Cancer Foundation is a registered 501(c)(3) nonprofit
organization serving the hereditary colon cancer community, with special emphasis on
the polyposis community, by connecting patients, caregivers, and medical professionals
to educational, social, and financial resources while promoting requisite research and
health care initiatives. We are building this community holistically by acting as a conduit
to physical and psychological care from a variety of traditional and modern health care
practices.

Ruling year info

2013

Executive Director

Dr. Travis Henry Bray Ph.D.

Operations Director

Mrs. Shawnie Richeal Bray

Main address

3519 NE 15th Avenue Unit 518

Portland , OR 97212 USA

Show more contact info

EIN

46-0610844

NTEE code info

Digestive Diseases, Disorders (G70)

Alliance/Advocacy Organizations (E01)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

Sign in or create an account to view Form(s) 990 for 2017, 2016 and 2015.
Register now

Communication

Programs and results

What we aim to solve

This profile needs more info.

If it is your nonprofit, add a problem overview.

Login and update

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Medical Support Services

TO INCREASE THE QUALITY OF CARE FOR PATIENTS, WE DELIVERED A WEBINAR EDUCATING 202 PROVIDERS ON THE MOST UP TO DATE CARE PROTOCOLS FOR THEIR HCCS PATIENTS. AS A RESULT, 95% OF RESPONDENTS FELT, PREPARED TO DEVELOP AN IMMEDIATE AND LONG-TERM CARE PLAN FOR THEIR PATIENTS.

TO ENSURE THE MOST APPROPRIATE SURGERIES ARE RECOMMENDED TO PATIENTS, WE DELIVERED A WEBINAR EDUCATING 175 PROVIDERS ON THE PROS AND CONS OF THE CURRENT COLECTOMY-RELATED SURGICAL OPTIONS. AS A RESULT, 95% OF RESPONDENTS FELT PREPARED TO DEFINE CURRENT COLECTOMY RELATED SURGICAL OPTIONS.

TO REDUCE THE LIKELIHOOD THAT SECONDARY MANIFESTATIONS BECOME DEADLY, WE DELIVERED A WEBINAR EDUCATING 162 PROVIDERS ON HOW TO SCREEN AND TREAT OTHER POTENTIAL EXTRACOLONIC EFFECTS OF POLYPOSIS CONDITIONS. AS A RESULT, 96% OF RESPONDENTS FELT PREPARED TO DEVELOP A CARE PLAN FOR THEIR PATIENTS THAT INCLUDES SCREENING FOR EXTRACOLONIC MANIFESTATIONS.

TO SUPPORT THE MEDICAL PROVIDERS WHO CARE FOR OUR PATIENTS, WE HELPED THEM STAY ABREAST OF CURRENT RESEARCH RESULTS BY PRESENTING A WEBINAR, NEWSLETTERS, AND SOCIAL MEDIA POSTS TO OVER 500 CLINICIANS. AS A RESULT, 96% OF RESPONDENTS FELT PREPARED TO RECOGNIZE THE POTENTIAL CLINICAL IMPLICATIONS OF RECENT RESEARCH ADVANCES.

TO ENSURE THAT PATIENTS ARE DIAGNOSED AT THE EARLIEST POSSIBLE STAGE AND RECEIVE A PERSONALIZED TREATMENT PLAN, WE DELIVERED A WEBINAR EDUCATING 159 PROVIDERS ON WHEN TO PERFORM A GENETIC TEST, WHICH TEST TO USE, AND HOW TO INTERPRET THE RESULTS. AS A RESULT, 98% OF RESPONDENTS FELT PREPARED TO IDENTIFY WHEN GENETIC SCREENING FOR A COLON CANCER SYNDROME IS NEEDED.

TO INCREASE AWARENESS OF HEREDITARY COLON CANCER SYNDROMES, WE DEVELOPED
AND MAILED AN INFORMATIONAL BROCHURE TO ALL MEMBERS OF THE AMERICAN
GASTROENTEROLOGICAL ASSOCIATION. >11,000 GASTROENTEROLOGISTS NOW HAVE A
RESOURCE FOR USE BY THEIR TEAM AND THEIR PATIENTS.

Population(s) Served

TO HELP PATIENTS TAKE CONTROL OF THEIR HEALTH CARE, OUR ONLINE RESOURCES WERE EXPANDED TO OVER 100 PAGES OF CONTENT AND CURRENTLY SERVES >1000 UNIQUE INDIVIDUALS MONTHLY.

TO HELP PATIENTS FIND QUALITY CARE, WE CREATED THE ONLY LIST OF GENETIC COUNSELORS WITH EXPERTISE IN SUPPORTING FAMILIES WITH HEREDITARY COLON CANCER SYNDROMES. 567 FAMILIES USED THIS TOOL TO FIND A GENETIC COUNSELOR NEAR THEM.

TO INSPIRE & SUPPORT FAMILIES AND CAREGIVERS, WE PRESENTED “WORDS OF WISDOM” - A COLLECTION OF ADVICE ON 31 TOPICS, FROM MORE THAN 100 PATIENTS AND CAREGIVERS AROUND THE WORLD. 645 FAMILIES ENGAGED WITH THIS RESOURCE FOR SUPPORT.

TO SUPPORT PATIENTS AND THEIR FAMILIES IN THEIR TIME OF NEED, WE RESPONDED TO ONLINE DISCUSSIONS, WITH AUDIENCES RANGING FROM 100 TO 5000, GUIDING PATIENTS TO CREDIBLE RESOURCES.

TO ADDRESS CHALLENGES PATIENTS WITH BOWEL DIVERSIONS FACE EVERY DAY, WE CONDUCTED A PILOT STUDY EXAMINING HOW DIET AND NUTRITION CAN AFFECT QUALITY OF LIFE. THE RESULTS WERE PRESENTED AT THE 2014 CONFERENCE OF THE COLLABORATIVE GROUP OF THE AMERICAS ON INHERITED COLORECTAL CANCER.

TO SUPPORT PATIENTS AND THEIR FAMILIES IN THEIR TIME OF NEED, WE RESPONDED TO ONLINE DISCUSSIONS, WITH AUDIENCES RANGING FROM 100 TO 5000, GUIDING PATIENTS TO CREDIBLE RESOURCES.

Population(s) Served

Where we work

This profile needs more info.

If it is your nonprofit, add geographic service areas to create a map on your profile.

Login and update

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

In years one through three, our goals will emphasize connecting patients, caregivers, and medical professionals to educational, social, and financial resources, while promoting requisite research and health care initiatives. Our long term goal is to
offer financial support to patients.

(1) Providing Educational, Social and Financial Resources:

Our patient portal will connect patients, caregivers, and medical professionals to
existing educational, social, and financial resources, physical and psychological care
from a variety of traditional and modern health care practices. It will also host newly
developed educational resources, as well as provide opportunities for patients to
actively connect with one another online and in person.

(2) Promoting Research & Health Care Initiatives:

We will develop partnerships with expert care facilities, along with other organizations,
to (a) increase public awareness of hereditary colon cancers, (b) promote requisite
research on hereditary colon cancers and polyposis conditions, (c) deliver current
information regarding early diagnosis, the latest research, and current patient standards
of care to medical practitioners, and (d) advocate for growth in the number of patients
who have access to specialists and specialized care units.

(3) Providing Financial Support:

We will support patients and their caregivers with financial assistance for screening and
treatment initiatives, medical bills, medical supplies, medication, supplements, end of
life care, hospice, and family planning.

1. Medical Professional Support Services

Raise awareness among medical professionals on how to better utilize available
screening and testing options capable of diagnosing hereditary colon cancer
syndromes. Medical professionals include gastroenterologists and gastroenterology
nurses

- Topics include:

(A) risk assessment, including screening and testing options, for early diagnosis
prophylactic treatment and surgical options

(B) the role and importance of genetic counseling

(C) options for reducing or preventing polyp growth

2. Patient Support Services

Educate patients regarding early detection and empower them to advocate for their care. Patients include those diagnosed with hereditary polyposis syndrome and people with a family history of colon cancer.

- Topics include:

(A) risk assessment, including screening and testing options, for early diagnosis

(B) prophylactic treatment and surgical options

(C) the role and importance of genetic counseling

(D) options for reducing or preventing polyp growth


A “Managing Your Care” section providing information on how or where to:

• locate a specialist or expert care facility

• find a genetic counselor

• browse dietary recommendations

• participate in patient registries

• learn about alternative health care options

• seek psychological support

• seek family planning support

• print HCC screening and treatment protocols

• browse financial assistance options

• find clinical trials

• know your legal rights

• keep up with current research

• Develop, promote, and deliver webinars to patients, care-givers, and medical professionals
• Develop early detection content for www.HCCTakesGuts.org patient portal
• Develop 'Manage Your Care' section for www.HCCTakesGuts.org patient portal
• Create and disseminate early detection printed patient materials
• Promote program materials at conferences
• Include prevention information in newsletters
• Promote campaigns on our web site and social media outlets

10/30/13 - 'How to Defy a Hereditary Predisposition and Defy Colon Cancer' webinar - presented by Drs. Randy Burt and Jewel Samadder of the Huntsman Cancer Instittue - ~150 registrants and ~100 attendees

10/19/13 - 'It Takes Guts 21 Day Challenge' - ~300 participants on four (4) continents joined this unique to challenge themselves to make a single impactful change in their life that would result in a higher quality of life.

08/2013 - Drs. Randy Burt MD, Jewel Samadder MD, MSc, and Deb Neklason PhD of the Huntsman Cancer Institute joined the Foundation's Board of Directors; Genetic counselors Brandi Leach MS, CGC (Cleveland Clinic) and Kory Jasperson MS, CGC (Huntsman Cancer Institute) joined the Foundation's Board of Directors; Patient advocates Alyssa Zeigler and Danielle Brannan joined the Foundation's Board of Directors.

Drs. Steve Erdman MD (Nationwide Children's Hospital) and Susan Peterson PhD (MD Anderson) became committee members; Genetic counselors Anne Leininger and Heather Hampel (OSU) became committee members.

Fall 2013 - Phase 1 of HCCTakesGuts.org patient portal completed

October 2013 - Hosted "How to Defy a Hereditary Predisposition and Prevent Colon Cancer" Webinar presented by Drs. Randy Burt and Jewell Samadder.

January - April 2014 - Produced content for "Manage Your Care" section of HCCTakesGuts.org Patient Portal, including Genetic Testing and Counseling, Registries, and Clinical Trials

April 2014 - Developed Comprehensive List of Genetic Counselors with Specialization in Genetic Bowel Cancer Conditions; Hosted "Squeeze Every Penny Out of Your Insurance" webinar

August - December 2014 - Hosted five (5) part "Preparing to Treat Polyposis Conditions" webinar series providing CEUs to over 200 genetic counselors through the National Society of Genetic Counselors

September 2014 - Presented information at Collaborative Group of the Americas on Inherited Colorectal Cancer from Anti-Inflammatory Diet to Enhance Post-Colectomy Quality of Life pilot study.

Financials

Hereditary Colon Cancer Foundation
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

The people, governance practices, and partners that make the organization tick.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Hereditary Colon Cancer Foundation

Board of directors
as of 4/27/2018
SOURCE: Self-reported by organization
Board chair

Joel Glidden

Michelle Beem Secretary

Randall Burt

Huntsman Cancer Institute

Joel Glidden Board Chairman

WorkDay

Beth Houck Treasurer

Brandi Leach

Cleveland Clinic

Deb Neklason

Huntsman Cancer Institute

Kristen Truffa

MANY

James Church

Cleveland Clinic

Heather Hampel

Ohio State University Health Services

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No