Letters from Our Founders
Fellow survivors and previvors,
Familial adenomatous polyposis started in my family with my paternal grandfather who, at age 36, was diagnosed with both F.A.P and terminal colon cancer. He was informed that he had six months to live and that three of his six children likely carried the same disease. His doctor was correct on all accounts.
My mother knew I had F.A.P. as a toddler when she first saw blood in my diapers. I was officially diagnosed much later and underwent a total colectomy at the age of 15. In the nearly two decades since, I have lived a fairly charmed life, at least relative to what most people with F.A.P. experience. That changed last September, just after I married my wife, Shawn.
In early October, 2011, I began noticing fresh blood when I used the bathroom. I was subsequently diagnosed with severe iron deficiency and a critically low blood count due to chronic blood loss. As a result, Shawn and I celebrated what I refer to as my "Vampiric Thanksgiving," eating hospital-cafeteria turkey sandwiches while I received two units of blood.
This experience was but a preamble to the assault-and-battery of tests that followed, all designed to discern the source of the bleeding. In December, 2011, alone, I was poked with a needle in excess of twenty times, experienced anaphylactic shock during an iron infusion, swallowed a pill camera to image my small bowel, and was forced to cancel our Mexico honeymoon trip because of a compromised immune system. During this extremely difficult month, my mortality was a common topic of discussion and I envisioned widowing Shawn far sooner than either of us ever anticipated. It was impossible not to give real consideration to whether or not I was developing cancer, or at the least on the precipice of a sharp decline in life quality.
While awaiting diagnosis from the several doctors we were working with, our home life was consumed by researching possible causes and cures. Even though our medical care givers seemed genuinely concerned, we eventually came to the conclusion that the problem presented by my rare disease proved to be challenging for each of them. Despite my background in research, all I was able to unearth was the unsettling truth that there was very little quality, in-depth information available to patients. Furthermore, to our dismay, no central, robust platform existed to provide educational resources or social support for F.A.P. patients and their loved-ones.
Then in March of 2012, for the first time in the history of my family, I came under the care of an F.A.P. specialist! What a massive relief this was, indeed. But the sad truth is that specialists and specialized care units, like the Familial Gastrointestinal Cancer Unit at the University of Illinois at Chicago's Hospital and Health Care Services, are rare; there are approximately twelve in the United States. As one might expect of a disease affecting 1 in 20,000, F.A.P. patients are diffusely scattered and often do not receive the benefit of specialized care.
After six months of physical and mental challenges, ulcers located at the site where my colon was replaced were identified as the source of blood. Shawn and I have since found through rigorous trial and error, coupled with exhaustive research into nutrition, that these bleeding ulcers are largely manageable by making nutritional modifications. For this alone, I consider myself extremely fortunate when compared with other F.A.P. patients.
While we were relieved that my diagnosis was not terminal, I considered this a ‘near hit’. and reevaluated my particular gifts and aptitudes. Four years after receiving my Ph.D. in Chemistry from Auburn University (War Eagle!!!), I stepped away from my budding career as a Research Chemist at Argonne National Lab to start the F.A.P. Foundation.
The penultimate goal of the Hereditary Colon Cancer Foundation is to bring together the hereditary colon cancer community holistically by acting as a conduit to physical and psychological care from a variety of traditional and modern health care practices. By drawing upon personal experiences, the support of my distinguished Board of Directors, and research we are conducting within in this small community, I am leading the charge to develop an infrastructure capable of (1) connecting patients and their loved ones to educational and social resources, (2) promoting requisite research and health care initiatives, and (3) providing financial assistance for screening, treatment, counseling, and family planning.
Incorporated July 19th, 2012, the vision of the HCC Foundation is to be a beacon of light - extending life expectancy, enhancing life quality, and instilling hope in those born with Familial Adenomatous Polyposis and other hereditary colon cancer diseases.
Your support as we develop this foundation is greatly appreciated. If you ever have a question, comment, suggestion, or concern, never hesitate to contact me by whatever means available!
Travis Bray, PhD
Previvor, Founder, and Executive Director
Hereditary Colon Cancer Foundation
Fellow care givers,
In March 2012, when Travis came up with the idea to cycle around Lake Michigan, I wasn't surprised. He’s always enjoyed physical challenges and after months of feeling weak, he needed to do something grandiose to prove to himself that his body was still resilient. When I learned it was 1000 miles and would take him 14 days, I had two choices: One, I could try to talk him out of it. But recalling all of the recent conversations about the potential brevity of his life, I dismissed this idea quickly. So I went with option two - I asked if I could join him. True, I didn't have a bike. True, the most I'd ever cycled was 7.5 miles. But also true was the fact that he was just recovering from six months of illness. During that time, I had become a nurse, a researcher, and a staunch advocate for his health. So the idea of him taking on such a grueling feat, without me by his side, was inconceivable.
With the decision made, Travis turned his attention to how our efforts could raise money to help others with F.A.P. The experience we had just endured made us acutely aware of how patients and their loved ones feel when they are desperately looking for answers, hoping to find that one nugget of information that says “It’s going to be ok. You’re going to be to survive this.” After extensive research, Travis came to the conclusion that we couldn’t contribute money to an organization that focused on F.A.P. patients, because it didn’t exist. Gulp. Before the words formed on his lips, I knew our life was about to take a left-hand turn. He had decided to build it himself.
I have always believed that when you’re moving in a worthwhile direction, the universe conspires to support you. This has never been more evident. It seems like small miracles occur every week. Sometimes we’ll overhear a stranger’s troubled conversation about a family member’s health issue and find that we are able to direct them to helpful resources. Other times, we’re at an unrelated event and find ourselves being introduced to someone who offers a service our budding Foundation really needs. Doors are continually opening for us. We are humbled by both the opportunity and the challenge.
Thank you for choosing to be a part of this. We are grateful for your support as we strive to create a beacon of light for people living with genetic cancer conditions.
Shawnie Bray, Co-Founder and Development Director
Hereditary Colon Cancer Foundation
Travis H. Bray, PhD