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”