© 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

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    2012-2013 Highlights

    • HCCTakesGuts.org the first FAP web site created to provide patient-friendly resources, such as: expert care facilities, disease information, financial resources, support organizations, recent research highlights, and current relevant news. HCCTakesGuts.org also provides patient support through a patient wisdom collection, Stories of Hope, links to support groups, and inspirational patient bloggers.

     

    • Released the first printed patient advocacy brochure for those diagnosed with FAP.

     

    • Hosted a “Diagnosis and Management of FAP” webinar, presented by Drs. Randy Burt and Jewell Samadder of the Huntsman Cancer Institute, viewed by over 700 medical professionals.

     

    • Attended the Collaborative Group of the Americas on Inherited Colorectal Cancer 2013 meeting as the only invited patient advocacy group. (We are also members of this organization.)

     

    • Inspired over 300 patients to improve their health through our inaugural “It Takes Guts! 21 Day Challenge”.

     

    • Through invitation... 

      • Travis Bray is participating as a patient advocate for the NCCN Colorectal Cancer Screening Panel.

      • Travis Bray is participating as a patient advocate for the Specialized Program of Research Excellence in GI Cancers, lead by Eugene W. Gerner, Ph.D., at the University of Arizona.

      • We are an official partner of the Lynch Syndrome Screening Network.

     

    • Supporting Partner of the Global Genes Project.

     

    • Have had the pleasure of collaborating with:

      • Tory Aldridge, patient advocate

      • Nicole Boice, Global Genes Project

      • Danielle Brannan, patient advocate and founder of Capes for Grayson

      • Linda Bruzzone, Lynch Syndrome International

      • Randall Burt, M.D. Huntsman Cancer Institute

      • Nancy Butterfield, Colon Cancer Alliance

      • Tiffany Costello, caregiver and patient advocate

      • Jennifer Cross Johnson, patient advocate

      • Dave Dubin, patient advocate and founder AliveAndKickn.org

      • Kasey Duffens, patient advocate and nurse

      • Carolyn Dumond, Myriad Genetics

      • Steven Erdman, M.D., Nationwide Children's Hospital

      • Carin Espenschied, C.G.C., M.S., Ambry Genetics

      • Dakota Fisher-Vance, patient advocate and founder FAPulous TV

      • Eugene W. Gerner, PhD, Cancer Prevention Pharmaceuticals

      • Heather Hampel, C.G.C., M.S., Ohio State University

      • Erika Hanson Brown, patient advocate and founder Colontown

      • Georgia Hurst, patient advocate and founder IHaveLynchSyndrome.com

      • Kory Jasperson, C.G.C., M.S., Huntsman Cancer Institute

      • Sara C. Knapke, C.G.C., M.S., National Society of Genetic Counselors

      • Brandie Leach, L.G.C., M.S., Cleveland Clinic

      • Anna Leininger, C.G.C., M.S., Minnesota Oncology Hematology PA

      • Jeannie Moore, Colon Cancer Alliance

      • Kate Mraz, L.G.C., M.S., Sutter Pacific Medical Foundation

      • Deborah Neklason, Ph.D., Huntsman Cancer Institute

      • Sharon Perlman, Colon Cancer Alliance for Research and Education for Lynch Syndrome

      • Susan Peterson, PhD, MPH, MD Anderson

      • Sara Pirzadeh-Miller, C.G.C., M.S., National Society of Genetic Counselors

      • Brooke Porretti, patient advocate

      • Frank Rider, patient advocate

      • David Rudzin, United Ostomy Associations of America

      • Jewel Samadder, M.D., M.Sc., Huntsman Cancer Institute

      • Michael Sapienza, Chris4Life Colon Cancer Foundation

      • Robert Selliah, PhD, American MedChem Nonprofit Corp

      • Nicole Sheehan, Colon Cancer AllianceLeanne Stinson, patient advocate

      • Michelle Sutter, patient advocate

      • Amber Trivedi, C.G.C., M.S., Informed DNA

      • Paul Wise, M.D., Collaborative Group of the American on Inherited Colorectal Cancer

      • Alyssa Zeigler, patient advocate and author “Learning to Live by Defying the Odds”