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”