Hereditary Colon Cancer Takes Guts
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
Announcing the Hereditary Colon Cancer Foundation
To our friends in the hereditary colon cancer community,
When Shawnie and I founded the Familial Adenomatous Polyposis
Foundation two years ago, it was easy to see how underserved the
FAP community was. There was a clear need for someone to work on
behalf of these strong cancer survivors and previvors. And we answered
the call to the best of our abilities.
While our mission has not changed, our knowledge and understanding of this community has steadily evolved. We have learned a great deal from patients, caregivers and medical professionals about the entire hereditary colon cancer syndromes (HCCS) community. The similarities in the challenges we all face tell us our work could serve more than those with FAP. Moving forward, we seek to supplement and support the ongoing efforts of our fellow patient advocacy organizations. Our united voices can be greater than the sum of our individual parts.
Effective today, April 1, we will begin operating under our new name - the Hereditary Colon Cancer Foundation. (No April Fool's joke here!)
We will work symbiotically with HCCS organizations by raising awareness of their work and acting as a conduit for patients to access their services. In return, we hope to draw from their experiences as we develop patient-friendly resources that can successfully empower patients to be strong advocates of their own health care. We will also collaborate to organize patient meet-ups. Further, the medical professionals who treat HCCS do not isolate and specialize in treating one particular HCCS - they treat them all. So we will continue to host webinars to improve the quality of medical care.
Our vision is to be a beacon of light - extending life expectancy, enhancing life quality, and instilling hope in those born with hereditary colon cancer syndromes. Thank you for supporting this endeavor.
Sincerely, Travis H. Bray, PhD
& the Directors of the Hereditary Colon Cancer Foundation
Attenuated FAP
Constitutional Mismatch Repair Deficiency
Cowden Syndrome
Familial Adenomatous Polyposis
Gardner Syndrome
Hereditary Mixed Polyposis Syndrome
Juvenile Polyposis Syndrome Lynch Syndrome
Muir-Torre Syndrome
MYH-Associated Polyposis
Peutz-Jeghers Syndrome
Serrated Polyposis Syndrome
The Hereditary Colon Cancer
Community Includes:
Our Amazing Support Team
Tory Aldridge, patient advocate
Danielle Brannan, patient advocate and founder of Capes for Grayson
Randall Burt, M.D. Huntsman Cancer Institute
Tiffany Costello, caregiver and patient advocate
Jennifer Cross Johnson, patient advocate
Kasey Duffens, R.N., and patient advocate
Steven Erdman, M.D., Nationwide Children's Hospital
Dakota Fisher-Vance, patient advocate and founder FAPulous TV
Heather Hampel, C.G.C., M.S., Ohio State University
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
Kate Mraz, L.G.C., M.S., Sutter Pacific Medical Foundation
Deborah Neklason, Ph.D., Huntsman Cancer Institute
Andrea Paal, C.G.C., M.S., WellStar Genetic Risk Assessment
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
Jewel Samadder, M.D., M.Sc., Huntsman Cancer Institute
Leanne Stinson, patient advocate
Michelle Sutter, patient advocate
Alyssa Zeigler, patient advocate and author “Learning to Live by Defying the Odds”