My Story

Five years ago, after completing treatment for colon cancer and battling another cancer afterwards, I had no idea I would become a fierce research advocate. Fierce is the perfect word to describe how I felt after being diagnosed with a third cancer and finding out I’m Lynch Syndrome positive; I realized that my voice was incredibly important and to think, it all started with a request to share my story!

Knowing that I would need the best treatment options for future cancer diagnosis I’d potentially face, I began my advocacy journey by communicating with my healthcare provider and team about my concerns, future cancer care, and where I could make a difference in other patients’ lives.

Ways I advocate:

• Attending Fight CRC’s annual Call-on Congress – this is where my understanding of how policy effects the future of cancer research and I, as the patient, could make a difference by forming a connection with my federal and state representatives.
• Becoming a Clinical Trial Curator for Fight CRC allowed me to understand the importance of various treatment options that are still in clinical trials that I know could possibly save my life.
• Serving as a PCORI Ambassador allowed me to network and further engage and understand the importance of cancer research and it’s the impact on the community, and led to an opportunity to serve on the Clinical Trials Advisory Board as a panel member.

As my confidence grew with the help of Fight CRC events and scholarship opportunities to attend research conferences, I developed a great group of friends from all cancer realms and began to get invitations to attend other cancer events.  This lead to an opportunity to have a smaller participant role to where I am now, being asked to give 30-minute presentations to a group of professional clinical researchers! To date, some of those involvements include:

• Writing articles and blogs for healthcare magazines on genetics and Lynch Syndrome
• Panel Member for NQF, CMS, DOD Consumer Reviewer, IRB Board Member for local community hospital
• Podcast for Colorectal Cancer
• Patient advocate representative and panelist at conferences held by the Dana-Farber Lynch Syndrome Institute, Lynch Syndrome Workshop (Colon Cancer Coalition), local community health fairs that included the FDA.

How do I have time to do all of this? 

While we are currently experiencing a pandemic, it has allowed me to make time for being that fierce research advocate on a virtual level.  Taking advantages of opportunities that would have required an in-person touch, I’ve been reaching out to ask if I can someway contribute virtually. Because of the unexpected value of virtual meetings and networks, I’ve now been given more opportunities to have my voice heard and to participate in online discussions. Never underestimate your role as an advocate. Your voice on behalf of others who don’t have the ability to or can’t speak out is invaluable!

My final thought for scientist and researchers is please consider the value patients bring to your research. Your ability to have a collaborative relationship will make your research and clinical trials even more value tested and trusted.

For patients who are possibly considering advocate roles and want the opportunity to be heard, work with organizations like Fight CRC who will help place you in comfortable settings to help you grow your voice. I encourage to you continue attending virtual conferences and ask questions in the Q&A sessions, ask for emails and contact information, and follow up by reaching out to conference organizers because they really want to involve advocates!