Committees for the Hereditary Colon Cancer Foundation

Education for Hereditary Colon Cancer Patients
Patient Education
Committee

Being diagnosed with a genetic condition is unlike any other singular diagnosis, including colon cancer. On social media sites, thousands of patients with hereditary colorectal cancer syndromes are expressing confusion, fear, and desperation. Many patients, and their caregivers, are not provided with resources to help them manage their long-term health. Others are given a host of information, provided by a facility that specializes in treating such conditions. However, due to the emotionally charged nature of the initial diagnosis appointment, it is often difficult for patients to absorb and retain all of the follow up recommendations.

 

The goal of the Patient Education Committee is to improve the physical and mental health of those living with a hereditary colon cancer syndrome by connecting them to resources that will improve their ability to manage their health and wellness. We will create an online hub of existing resources, develop new resources, and make many of these resources available in print form.

 

Members: 

Tory Aldridge, patient advocate and nutrition enthusiast

Michelle Beem, Foundation board member and digital training guru

Danielle Brannan, patient advocate and founder of Capes for Grayson

Shawnie Bray, MEd, caregiver, Foundation Vice President and educator

Travis Bray, patient advocate, Foundation President, and researcher

Steve Erdman, MD, pediatric gastroenterologist 

Dakota Fisher-Vance, patient advocate, vlogger: FAPulousTV

Heather Hampel, LGC, MS

Beth Houck, Foundation board member and health informatics expert

Georgia Hurst, patient advocate and founder IHaveLynchSyndrome.com

Brandie Leach, LGC, MS, Foundation board member

Anna Leininger, CGC, MS  and “FAP and Me” co-author

Kate Mraz, LGC, MS 

Frank Rider, MS, patient advocate and social worker

Michelle Sutter, patient advocate and insurance guru

Alyssa Zeigler, patient advocate, Foundation board member, blogger, and author

Networking Opportunities for Hereditary Colon Cancer Patients
Patient Networking
Committee
Hereditary Colon Cancer Medical Professional Committee
Medical Professional
Outreach
Committee

Hereditary colon cancer syndromes (HCCS) are rare, accounting for 5-10% of all colon cancers; most HCCSs, i.e. Familial Adenomatous Polyposis (FAP, Attenuated FAP, MUYTH-Associated Polyposis (MAP), etc., are in fact considered ‘orphan diseases.’ Given the rarity of these diseases, patients are often diffusely scattered and experience their specific disease in isolation. Left to their own devices, many patients eventually turn to social media sites to connect with patients with whom they can identify and gain insight into the patient experience. While guided by good intentions, these sites are often managed by patients with no official training in patient mentoring or counseling.

 

The goal of the Patient Networking Committee is to develop platforms for guided patient interactions where they can be supported in a consistently healthy manner. This will be accomplished by supporting:

  • Local support groups, meeting quarterly, led by genetic counselors

  • A one-on-one or small group online peer mentoring program

As a patient advocacy organization, partnering with medical professionals is paramount to our success. We seek not to work independently, but rather collaboratively, with those individuals, facilities, and organizations who also serve the hereditary colon cancer community.

 

The goal of the Medical Professional Outreach Committee is to improve the physical and mental health of those living with a hereditary colon cancer syndrome by:

  • Ensuring the work of the Foundation supports medical professionals in their treatment of families with hereditary colon cancer syndromes.

  • Soliciting guidance from medical professionals regarding our strategies and activities.

  • Receiving support from individuals, facilities, and organizations in our efforts to deliver resources to patients, caregivers and medical professionals.

 

Members: 

Shawnie Bray, MEd, caregiver, Foundation Vice President and educator

Travis Bray, PhD, patient advocate, Foundation President, and researcher

Danielle Brannan, patient advocate and founder of Capes for Grayson

Kasey Duffens, RN and patient advocate 

Dakota Fisher-Vance, patient advocate, vlogger: FAPulousTV

Joel Glidden, Foundation board member and business analyst

Kory Jasperson, CGC, MS,  and Foundation board member

Susan Peterson, PhDMPH, 

behavioral sciences researcher

Leanne Stinson, patient advocate

Michelle Sutter, patient advocate and medical insurance guru

Alyssa Zeigler, patient advocate, Foundation board member, blogger, and author

 

Members: 

Shawnie Bray, MEd, caregiver, Foundation Vice President and educator

Travis Bray, PhD, patient advocate, Foundation President, and researcher

Danielle Brannan, patient advocate and founder of Capes for Grayson

Randy Burt, MD, gastroenterologist and Foundation board member

Kasey Duffens, RN, patient advocate 

Dakota Fisher-Vance, patient advocate, vlogger: FAPulousTV

Joel Glidden, Foundation board member and business analyst

Beth Houck, Foundation board member and health informatics expert

Adrea Paal, CGC, MS

Susan Peterson, PhDMPH, 

behavioral sciences researcher

Jewel Samadder, MD, MSc, 

gastroenterologist

"Many hands make light work." - John Heywood

 

If you would like to support the hereditary colon cancer community by joining a committee, we'd love to have you on our team! Please contact us.