Meet the Research Advocates

“My husband, Terry, was diagnosed when my son, Aidan was 11 months old, and my other son, Aaron was nine years old. It was quite a challenging time as a caregiver, working full time, and being a mom. Unfortunately, Terry passed away 3 years later. Now I’m the caregiver to my 97-year-old mother, who was diagnosed with CRC at the age of 93. You are never too old to have a colonoscopy! She is currently doing well. 

“After my mom’s surgery, I was searching for a way to give back and help those within the colorectal cancer community. I found the Fight CRC Ambassador program through a Google search. While at Call-on Congress, Andi Dwyer suggested the Research Training Advocacy and Support (RATS) program to me. 

“The most impactful thing I’ve done so far as a research advocate was sitting on the Peer-Reviewed Cancer Research Program (PRCRP) review panel. There were some amazing research applications submitted and I greatly enjoyed doing my small part to hopefully get some of these research projects funded. 

“Research is necessary to triumph over the wily cancer beast so that no one will ever have to grow up without a parent due to this horrible disease.”

Anita had just turned 41 when she diagnosed with IV Colon Cancer in 2005. Her primary care dr had dismissed her symptoms 4 months earlier. It was not until the symptoms progressed and Anita found out her that her Dad who had passed from cancer at 46 had Colon Cancer, was she referred for a scope. Anita was busy rasing three kids ages 9, 12, 13, at diagnosis. 

After finding out how preventable CRC is with on time screening she was determined to bring awareness about early-onset CRC and family history and started Dress in Blue Day at her children’s school. She founded Washington Colon Cancer Stars with her state Colon Cancer Task force. She leads two long running support groups for CRC patients and helps local researchers connect with patients for focus groups. Her goal is to see this disease get the funding and awareness to change the landscape so no one has to die. 

Top accomplishments 

• Testifying for bill 1337 that passed to mandiate insurance companies in Washington State to cover colonoscopies.
• Serves on Grand Challenge Team Opptumisticc as a patient advocate a international 25 million dollar project funded by Cancer  Research UK and National Cancer .
• Served on a Patient Centered Pathology grant and co authoring published papers. 

Karen Wehling has been a Research Advocate with Fight CRC for five years. She is also a patient advocate and nine year survivor of stage IV colorectal cancer (CRC).

Using skills from her research advocacy training, she has been involved in the Early-Age Onset Colorectal Cancer Workgroups, a main focus of her colorectal cancer advocacy. She also uses her research advocacy skills as a curator of the Fight CRC Trial Finder. 

In addition, she is a member of the Colorado Colorectal Cancer Task Force, part of the Colorado Cancer Coalition. This group works to raise awareness as well as assists the underserved in Colorado with CRC screenings, and is currently working with the legislature to lower the age for CRC screenings to 45 in Colorado.

Karen is involved directly with the evaluation of clinical trials as a member of COMIRB, the Colorado IRB, which is a committee that reviews proposed research studies for their ethical treatment in clinical trials with human subjects. She does all of this in the hope that her children and grandchildren will live in a world where CRC is no longer the second-leading cause of cancer death.

I lost my very healthy and very active partner, Andy, to colon cancer.  He was diagnosed at 47 years old at stage IV.  After spending as much time together as possible for the next three and a half years, we ran out of treatment options, and our future, after 28 years together, painfully became my future.  I will always fight for Andy and I have taken on many advocacy roles in his honor.

I’m thankful for the many advocacy opportunities available to me and I am proud to be a member of the Fight CRC RATS team, to be a member of the Patient and Family Advisory Council at our local hospital, and to have had the opportunity to work with a local organization to set up Andy’s Kayak Rentals in his memory. I often reflect on a quote that I once saw which says that we should take the very best of those we’ve lost and bring it out into the world in their honor. In advocacy, this is possible.

Role in Research Advocacy

• Call-on-Congress – Telling our story to members of Congress in a way that can impact legislation and funding decisions.
• Andy’s Kayak Rentals – This takes the active, outdoor loving, traits of Andy and combines them with spreading awareness of colorectal cancer into the local community and provides donations to Fight CRC.
• Young Investigator Workshop – As advocate attendees, we were able to sit with young investigators and tell them our stories. They actively engaged with us and were eager to understand how their work could make an impact in the lives of real patients.

I am a three-time cancer survivor. Stage III Colon Cancer and Stage III Duodenum Cancer. I have worked in higher education for twenty-four years. I am honored to be a Research Advocate.

Goals as a Research Advocate

1. To give back
2. To be part of a community
3. Enhance my knowledge of cancer and treatments

I’m a 3x cancer survivor with Lynch Syndrome who never wanted cancer, but having it made me realize just how important my voice can be as an advocate!  As a RATS Advocate and Clinical Trials Curator for Fight CRC and volunteer for other organizations such as PCORI, FORCE, and NCCS, I’ve had an opportunity to understand how policy, research, and clinical trials have a powerful impact in my community, especially when it comes to healthcare disparities.

“I’ve been a grant reviewer for DoD, the V Foundation and ASCO.I also serve as a Patient Advocate on various panels and boards that include Centers for Medicaid & Medicare, Flatiron Health, Blue Note Therapeutics, iBeat CRC, National Quality Forum, NRG Oncology, PCORI Clinical Trials and as an IRB member for my local community hospital.”

As a committed Research Advocate, I plan to continue my training with cancer research, genetics, and clinical trials to be a successful addition to healthcare organizations in need of hearing the patients’ voice. I plan to collaborate, disseminate, and promote activities of programs that highlight areas of cross-collaboration, diversity, and equity. 

Her Role in Research Advocacy

As a Research Advocate, my top three advocacy achievements are:

1. Attending policy change events on Capitol Hill that actually inspired real change that included new recommended guidelines to lower colorectal screening age from 50 to 45.

2. Creating my first Abstract Poster entitled “Understanding financial toxicities and disparities associated with treatment of Colorectal Cancer in the minority community” presented at the AACR Scientist Survivor Program on healthcare disparities. The Scientist Survivor Program is designed to build enduring partnerships among the leaders of the scientific, cancer survivor, and patient advocacy.

3. Being selected as a Consumer Reviewer with the Department of Defense CDMRP Program. Serving as a Peer and Programmatic review panel member with full voting rights on cancer research projects that are relevant and has the potential to make a significant impact on the community affected.

Features as a Research Advocate

Wenora’s story was featured by the Centers for Disease Control and Prevention (CDC). You can view the video below!

Ben’s diagnosis of stage III colon cancer at age 26 cut his career as a Naval Aviator short. Though he’s no longer flying helicopters for the Navy, he is now in the next chapter of his life and is currently celebrating three years cancer free. Ben has spent the last few years volunteering in both legislative and research cancer advocacy programs with Fight CRC, and is currently pursuing a Masters in Public Policy in the hopes to be able to professionally contribute in the cancer advocacy space in the future. 

Goals as a Research Advocate

1. Sit as the patient reviewer on an early-onset CRC research panel

2. Join a CRC advisory board as the patient advocate

3. Sit on another DOD PRCRP board

For the last four and a half years, Ann has become an experienced patient advocate, especially in the areas of clinical trial assistance for colorectal cancer patients (including knowledge of relevant biomarkers such as MSI, BRAF, NRAS and KRAS).  Ann shares information on (almost) a daily basis with a number of online colorectal cancer groups – from small specific biomarker driven groups (BRAF CRC, KRAS mutated NRAS group) to very large online communities e.g. Stage 4 Colorectal Cancer Facebook group with 4,668 members and the Immunotherapy Support group with 3660 patient/family members.

Goals as a Research Advocate

• To have a science-based support/research group for immunotherapy patients (e.g MSI patients or lung patients with good biomarkers. This would have great resources (e.g. from SITC, Cancer Research Institute) but also updates on clinical trials that are working on improvements to immunotherapy trials e.g. moving promising treatments into first line. Getting approval of checkpoint inhibitors is just the beginning of this era in immunotherapy. But many give up on immunotherapy if a checkpoint inhibitor stops working.
• To help patients find out ways that use of liquid biopsies can give them more options and time – e.g. to rechallenge a targeted treatment, to monitor biomarkers of response to immunotherapy OR non-response to a treatment like TAS-102 or Regorafenib.
• To be a trusted voice for important news that could be impactful and helpful for patients.

Allison Rosen is a Houston, Texas native and colorectal cancer survivor. She dedicates her life to use her voice and platform to educate, advocate, and continuously learn how best to represent the collective colorectal cancer community.

Allison is Director of Project ECHO at the American Cancer Society, focusing on colorectal cancer prevention. She has a combined 15 years of experience in the oncology space, focusing on designing, implementing, and evaluating public health programs and initiatives to address cancer awareness and disparities among the medically underserved. 

She serves as a patient advocate working with Fight Colorectal Cancer, the National Coalition for Cancer Survivorship, the American Cancer Society Cancer Action Network, the Colorectal Cancer Alliance, the Colon Cancer Coalition, and SWOG Cancer Research Network and volunteers at MD Anderson Cancer Center. 

Through her own experience at beating stage II colorectal cancer, she works to bridge the gap between the healthcare system and the communities that it serves. Allison loves to travel, nature, music, dancing, and will never say “no” to an adventure.

My top three goals as a research advocate are simple: educate, advocate, and collaborate in an effort to spread awareness about colorectal cancer and save lives!

Lee was diagnosed with Stage IV colon cancer in March 2004 and after undergoing 18 rounds of chemotherapy and a liver resection in July 2006 has been cancer free. Lee has a BA in Psychology and an MBA in Finance and had a successful executive career in government, banking, consulting, and not-for-profit organizations. 

To help others survive and thrive after a cancer diagnosis, Lee became active with Fight Colorectal Cancer as a research advocate, and became a member of the Georgetown Oncology Institutional Review Board (IRB). He is a research advocate member of the SWOG Survivorship Committee and past patient member of the PCORI Clinical Trials Advisory Panel (CTAP); is on the Boards of the Cancer Action Coalition of Virginia (CACV), the Ruesch Center (Georgetown University), and the Cancer Policy and Advocacy Team (CPAT) of the National Coalition for Cancer Survivorship; has been a peer research proposal reviewer for ASCO, PCORI and the DOD; and is a member of ASCO, the National Colorectal Cancer Roundtable, and the Alliance for Regenerative Medicine (ARM). 

Lee has collaborated on several projects sponsored by The Friends of Cancer Research, including defining tolerability, reporting adverse events and tightening exclusion criteria, and has been a speaker at Ruesch Center, AAADV, CPAT, FDA and NCCN conferences. Lee has been appointed as a patient representative on the NCI’s Early Phase Emphasis Central IRB starting in January 2021, and is an advocate member of a multi-national team studying the relationship of the human microbiome and colorectal cancer.

As a cancer patient and survivor, Lee is committed to promoting the patient voice in cancer research, treatments, medical care, and the health care system in general.

His Role in Research Advocacy

• Advocate member of international team studying the relationship between the human microbiome and CRC
• Competitive selection to serve on the NCI Central IRB for early phase clinical trials
• Serves as a research advocate with the SWOG Cancer Research Network and helped to launch a trial to improve quality of life for rectal cancer survivors

Curt Pesmen is an author,  advocate, documentary producer and Cofounder of BoCo Media, LLC. He serves as Research Advocate for Fight Colorectal Cancer, Springfield, MO, and Advocate Reviewer for the Cancer Prevention Research Institute of Texas (CPRIT). In addition to serving as associate producer of the hit documentary, Keep On Keepin’ On (Radius 2014), and executive producer of LIV, a documentary short film (2019), he also has written material for the Emmy award-winning film, Chasing Ice (2013). He is author of ​How A Man Ages​, The Colon Cancer Survivors’ Guide ​(Tatra Press), and more recently wrote ​My Cancer Year​ (2015). At​ Self ​magazine in New York City he helped develop the internationally recognized pink ribbon breast cancer awareness campaign in the 1990s. He lives with his family in Boulder, Colorado.

His Role in Research Advocacy

• Serves as a Research Advocate for CPRIT, the $3B funded Cancer Prevention and Research Institute of Texas on a twice-yearly basis. Being selected and reviewing 65-70 grant applications for new cancer drugs of all types for all cancers
• Attended the ASCO GI meeting in January 2018 and brokered a meeting between seven research advocates and Alan Venook, M.D., (my ex-medical onc!) an ASCO speaker + director of UCSF GI-Oncology. He shared the key differences between “left-sided” CRC diagnoses and “right-sided” CRCs and how his lab was instrumental in reporting the finding that these CRCs should be treated differently
• Spoke at Call-on Congress 2015 in Washington, D.C. as a new Research Advocate, which allowed me to share research from my book, My Cancer Year, including the legendary advice of an onc-surgeon: “Cancer is a WORD, not a SENTENCE!”