© 2017 Hereditary Colon Cancer Foundation

 

www.HereditaryColonCancerFoundation.org and www.HCCTakesGuts.org are informational and support websites for those affected by hereditary colon cancer syndromes. The website does not provide medical advice, recommend or endorse health care products or services, or control the information found on external websites.

 

Hereditary Colon Cancer Foundation and the Familial Adenomatous Polyposis Foundation are registered charitable organizations in Illinois and Utah, and tax-exempt under Internal Revenue Code Section 501(c)(3). Mailing address: 3519 NE 15th Avenue, Unit 518, Portland, OR 97212  |  info@HCCTakesGuts.org

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Hereditary Colon Cancer Takes Guts

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    Attenuated FAP, Cowden Syndrome, Familial Adenomatous Polyposis, Gardner Syndrome, 

    Hereditary Mixed Polyposis, Juvenile Polyposis Syndrome, Lynch Syndrome, Muir-Torre Syndrome, MYH-Associated Polyposis, Peutz-Jeghers Syndrome, Turcot Syndrome

    Hereditary Colon Cancer Foundation 2015 Programs

    Please contact us for more information on our 2015 Programs.

    Patient Fund:

    The Foundation is creating the only patient grant for families effected by any hereditary colon cancer syndrome. With development guidance provided by the Colon Cancer Alliance, our goal is to publicly announce the grant by the end of 2015. Grants will be available for three areas of need: financial hardship, genetic testing, and costs associated with visiting a center of excellence. 

     

    Lynch Syndrome Webinar Series: 

    This series for medical professionals will build on the success of our 2013 and 2014 webinars. Our 2013 webinar, “How to Defy a Hereditary Predisposition and Prevent Colon Cancer,” yielded ~1200 views. Our 2014 series, offering five webinars on “Preparing to Treat Polyposis Conditions,” drew in over 200 registrants, is providing Category 1 CEUs via the NSGC, and has yielded an average of ~150 viewers within one month of availability. We anticipate the total number of viewers for each webinar to exceed 1000 viewers in the first year. 

     

    Presented by medical professionals with expertise in treating Lynch Syndrome, these webinars will start in March 2015 and run monthly through September 2015. The Lynch Syndrome webinar series will cover the following topics:

     

    • Defining Lynch Syndrome: An Overview - Rick Boland, Jr., MD - Baylor Health Care System

     

    • Universal Tumor Screening for Lynch Syndrome and the Impact on Colorectal Cancer Care - Kory Jasperson, MS, CGC - University of Utah Huntsman Cancer Institute

     

    • Gastrointestinal Manifestations in Lynch Syndrome - Fay Kastrinos, MD - New York-Presbyterian/Columbia University

     

    • Gynecological Manifestations in Lynch Syndrome - Karen Lu, MD - University of Texas MD Anderson Cancer Clinic

     

    • Secondary Manifestations in Lynch Syndrome: Breast, Prostate, Sebaceous, and Other Tumors - Patrick Lynch, JD, MD - University of Texas MD Anderson Cancer Clinic

     

    • Atypical Lynch and When it’s Not Lynch  - Heather Hampel, MS, LGC - Ohio State University Comprehensive Cancer Center

     

    • Lynch Syndrome: Patient Centered Care - Susan Peterson, PhD, MPH - University of Texas MD Anderson Cancer Clinic

     

    Patient "Education & Support" Groups:

    Given the rarity of hereditary colon cancer syndromes, patients are frequently diffusely dispersed and experience their condition in a vacuum. Peer-based support programs empower patients to improve the management of their health while providing them meaningful opportunities to help others facing similar challenges. The Foundation is working with motivated individuals, in tandem with centers of excellence, to start local chapters of “HCCTakesGuts Education & Support Groups” across the North America. In addition to providing patients an opportunity to network, these groups will incorporate educational resources provided by the Foundation and materials produced and/or presented by local specialists. 

     

    Plug-n-Play Patient Days at Centers of Excellence:

    Centers of excellence seek to keep patients returning on an annual basis for preventative care. Best practices suggest that regular newsletters and patient-centered events (Patient Days) increase patient retention rate. Because centers can gather and disseminate information to a large group of patients simultaneously, Patient Days also offer an opportunity for cost savings and action research. Despite the potential benefits, staff at the centers don’t have the bandwidth to develop these events. The Foundation will be releasing a plug-n-play Patient Day program for centers of excellence, making these events easily implemented. 

     

    HCCTakesGuts.org Site Redesign:

    Our current web site was designed in-house using a development tool and platform called Wix. We currently have ~1000 unique visitors per month and have outgrown this platform. We require a new web site developed in a way to best serve our rapidly growing patient network. 

     

    Financial Resources Directory:

    The Foundation receives numerous requests for financial support from patients, and from providers on behalf of their patients. In addition to the creation of our patient fund, we are developing a comprehensive list of financial resources available to our patient population. This list will include resources for colonoscopies, genetic tests, cancer treatments, pharmaceuticals, co-pays, medical travel costs, food and utilities. This Financial Resource Directory will be emailed to our patient population, promoted via social media and added to our web site. Additionally, it will be sent to providers so they may print and distribute to their patients. This resource will be updated quarterly.