About the Program

Our Vision

Our vision is a world where no person will die from colorectal cancer. The major impact of our research program will be to generate a comprehensive picture of the still-mysterious colorectal cancer microbiome in cancer pathogenesis and treatment. We call our research program “OPTIMISTICC”, “OPportunity To Investigate the Microbiome’s Impact on Science and Treatment In Colorectal Cancer”. We are indeed optimistic that in five years, we will be using the knowledge of the microbiome to create new research and treatment paradigms for colorectal cancer and to improve the lives of patients with this terrible disease.

Program Overview

Our grant addresses the gut microbiome which consists of microorganisms including bacteria, fungi, and viruses. Together, they form a community called the microbiota or microbiome, which differs from organ to organ and person to person. Scientists have shown that these microorganisms have important
roles in maintaining human health, but they can also play a role in the development of disease – including cancer.

To meet this Grand Challenge, we are focusing on two parts. The first part is an atlas of the colorectal cancer microbiome, across time and space. The goal is to understand how genetics and lifestyle risks impact the development of the colon cancer microbiome, and how this microbiome varies in populations. We will also examine the location of the microbiome within the colon cancer—how the microbiome is connected to cancer, immune and other human cells.

The second part is to investigate what happens when we try to treat the microbiome. Here the interactions between the microbiome and the immune system will be studied, and we will assess how current colon cancer treatments affect the microbiome. We will also analyze innovative new treatments that either treat the colon cancer microbiome or replace it with a healthier microbiome.

We have assembled a unique international team of physicians, scientists, and patient advocates to address these important and challenging questions in six separate work packages. The members of our team have led the way in understanding the biology of colon cancer, in general, and the colon cancer microbiome. We believe that we are the right group, at the right time, to address these important questions.

Researchers from our team have discovered that unique populations of bacteria not found in the normal colon are present in colorectal cancers and pre cancers. These bacteria, also known as the colorectal cancer microbiota or microbiome, are found in cancers within the colon and in colon cancers that have spread, or metastasized, to other organs.

By the end of the project we hope to have a greater understanding of the microbiota’s relationship and impact on the risk, diagnosis and spread of colorectal cancer. We also hope to identify novel treatment strategies by manipulating the microbiota, and to gain insight into the impact of the microbiota on treatment and survivorship in people with colorectal cancer.

Meet the Team

The OPTIMISTICC team is comprised of investigators, scientists, trainees, and staff from 13 labs and patient advocates from across the world.

Investigators

Matthew Meyerson, MD, PhD

Co-Principal Investigator

Organization: Dana-Farber Cancer Institute, Harvard Medical School, Broad Institute of MIT & Harvard, Boston, Massachusetts and Cambridge, Massachusetts
Meet Matthew Meyerson, MD, PhD

Matthew Meyerson, MD, PhD

Designation:

Co-Principal Investigator

Organizations:

Dana-Farber Cancer Institute, Harvard Medical School, Broad Institute of MIT & Harvard, Boston, Massachusetts and Cambridge, Massachusetts

Discipline:

Cancer genomics

Professor of Genetics and Medicine, Harvard Medical School

Director, Center for Cancer Genomics, Dana-Farber Cancer Institute

Institute Member, Cancer Program, Broad Institute of MIT & Harvard

Wendy Garrett, MD, PhD

Co-Principal Investigator

Organization: Harvard TH Chan School of Public Health/Harvard Medical School Boston, Massachusetts
Meet Wendy Garrett, MD, PhD

Wendy Garrett, MD, PhD

Designation:

Co-Principal Investigator

Organizations:

Harvard TH Chan School of Public Health/Harvard Medical School Boston, Massachusetts

Discipline:

Immunology; Infectious diseases

Professor of Immunology and Infectious Diseases

 

Emma Allen-Vercoe, PhD

Co-Investigator

Organization: University of Guelph Ontario, Canada 
Meet Emma Allen-Vercoe, PhD

Emma Allen-Vercoe, PhD

Designation:

Co-Investigator

Organizations:

University of Guelph Ontario, Canada 

Discipline:

Microbiology

Professor and Canada Research Chair

Department of Molecular and Cellular Biology

University of Guelph

Hans Clevers, MD, PhD

Co-Investigator

Organization: Hubrecht Institute, University Medical Center Utrecht, Princess Maxima Centre for Pediatric Oncology Utrecht, the Netherlands 
Meet Hans Clevers, MD, PhD

Hans Clevers, MD, PhD

Designation:

Co-Investigator

Organizations:

Hubrecht Institute, University Medical Center Utrecht, Princess Maxima Centre for Pediatric Oncology Utrecht, the Netherlands 

Discipline:

Cancer research; Stem cell research

Professor of Molecular Genetics, University Medical Center Utrecht

Principal Investigator at the Hubrecht Institute (KNAW) and the Princess Máxima Center for Pediatric Oncology.

Marios Giannakis, MD, PhD

Co-Investigator

Organization: Dana-Farber Cancer Institute, Broad Institute of MIT and Harvard, Harvard Medical School Boston, Massachusetts
Meet Marios Giannakis, MD, PhD

Marios Giannakis, MD, PhD

Designation:

Co-Investigator

Organizations:

Dana-Farber Cancer Institute, Broad Institute of MIT and Harvard, Harvard Medical School Boston, Massachusetts

Discipline:

Gastrointestinal oncology

Assistant Professor in Medicine

Robert Holt, PhD

Co-Investigator

Organization: BC Cancer Agency
Meet Robert Holt, PhD

Robert Holt, PhD

Designation:

Co-Investigator

Organizations:

BC Cancer Agency

Discipline:

Medical genetics

Scientific Co-Director, BC Cancer, Immunotherapy Program

Distinguished Scientist, BC Cancer, Genome Sciences Centre

Professor, University of British Columbia, Department of Medical Genetics,

Professor, Simon Fraser University, Department of Molecular Biology & Biochemistry

Curtis Huttenhower, PhD

Co-Investigator

Organization: Harvard TH Chan School of Public Health Boston, Massachusetts​
Curtis Huttenhower, PhD Curtis Huttenhower, PhD
Meet Curtis Huttenhower, PhD

Curtis Huttenhower, PhD

Designation:

Co-Investigator

Organizations:

Harvard TH Chan School of Public Health Boston, Massachusetts​

Discipline:

Microbial metagenomics

Professor of Computational Biology and Bioinformatics

Departments of Biostatistics and Immunology and Infectious Diseases

Associate Member, Broad Institute of MIT and Harvard

Co-director, Harvard Chan Microbiome in Public Health Center

Kimmie Ng, MD, MPH

Co-Investigator

Organization: Dana-Farber Cancer Institute
Meet Kimmie Ng, MD, MPH

Kimmie Ng, MD, MPH

Designation:

Co-Investigator

Organizations:

Dana-Farber Cancer Institute

Discipline:

Gastrointestinal oncology

Associate Professor of Medicine, Harvard Medical School

Director, Young-Onset Colorectal Cancer Center

Co-Director, Colon and Rectal Cancer Center

Director of Translational Research

Center for Gastrointestinal Oncology, Dana-Farber Cancer Institute

Shuji Ogino, MD, PhD, MS

Co-Investigator

Organization: Brigham and Women’s Hospital, Harvard T.H. Chan School of Public Health/ Harvard Medical School Broad Institute of MIT and Harvard
Meet Shuji Ogino, MD, PhD, MS

Shuji Ogino, MD, PhD, MS

Designation:

Co-Investigator

Organizations:

Brigham and Women’s Hospital, Harvard T.H. Chan School of Public Health/ Harvard Medical School Broad Institute of MIT and Harvard

Discipline:

Molecular pathological epidemiology

Professor of Pathology, Brigham & Women’s Hospital, Harvard Medical School 

Professor (Epidemiology), Harvard T.H. Chan School of Public Health                 

Chief Program in Molecular Pathological Epidemiology, Brigham and Women's 

Associate Member, Broad Institute of MIT and Harvard

Josep Tabernero, MD, PhD

Co-Investigator

Organization: Vall d’Hebron Institute of Oncology
Meet Josep Tabernero, MD, PhD

Josep Tabernero, MD, PhD

Designation:

Co-Investigator

Organizations:

Vall d’Hebron Institute of Oncology

Discipline:

Medical oncology

Director of Vall d’Hebron Institute of Oncology

Head of the Medical Oncology Department of Vall d’Hebron University Hospital

Director of Clinical Research at Vall d’Hebron Institute of Oncology

Co-Director of Research Unit for Molecular Therapy of Cancer-“la Caixa” at Vall d’Hebron Institute of Oncology

Head of the Gastrointestinal and Endocrine Tumors Group at Vall d’Hebron Institute of Oncology

Director of Innovation, Care and Research, Catalonian Oncology Network. Barcelona, Spain.

Professor, Medicine Department, Universitat de Vic, Universitat Central de Catalunya. Vic, Barcelona, Spain.

Laura Porter, MD

Co-Investigator, Patient Advocate

Organization: Independent medical advisor and patient advocate
Meet Laura Porter, MD

Laura Porter, MD

Designation:

Co-Investigator, Patient Advocate

Organizations:

Independent medical advisor and patient advocate

Discipline:

Medicine; Advocacy

Dr. Laura Porter is a stage IV colon cancer survivor and has worked as a patient advocate in a variety of roles, including research advocacy, grant reviews, as a Medical Advisor for advocacy organizations, educational support, support groups, one-on-one support, and writing blogs for advocacy organizations.  

As a research advocate, she serves on the NCI Rectal-Anal Task Force, and the Patient Advocate Steering Committee. She serves on several committees with ASCO including the Onco-PCP Task Force, to incorporate primary care and oncologists so the survivors have appropriate follow-up, once treatment ends.  She is on two panels with the National Quality Forum including being on the Opioid Technical Expert Panel.  She reviews grants as a patient advocate for Cancer Prevention and Research Institute of Texas (CPRIT), Conquer Cancer and the Colorectal Cancer Alliance.  She is a Special Government Employee at the FDA. She is currently a Co-Investigator on an international grant through Cancer Research United Kingdom, team OPTIMISITICC. She is responsible for the recruitment and management of the patient advocates on the project.

Prof Fiona Powrie, FRS

Co-Investigator

Organization: University of Oxford
Meet Prof Fiona Powrie, FRS

Prof Fiona Powrie, FRS

Designation:

Co-Investigator

Organizations:

University of Oxford

Discipline:

Microbiology; Immunology

Director Kennedy Institute of Rheumatology, Translational
Gastroenterology Unit, Experimental Medicine Division Professor of
Microbiology & Immunology

Philip Quirke, BM, PhD, FRCPath, FRCSEd (ad hominem), FFPath (Hon), RCPI, FMedSci

Co-Investigator

Organization: University of Leeds
Philip Quirke, BM, PhD, FRCPath, FRCSEd (ad hominem), FFPath (Hon), RCPI, FMedSci Philip Quirke, BM, PhD, FRCPath, FRCSEd (ad hominem), FFPath (Hon), RCPI, FMedSci
Meet Philip Quirke, BM, PhD, FRCPath, FRCSEd (ad hominem), FFPath (Hon), RCPI, FMedSci

Philip Quirke, BM, PhD, FRCPath, FRCSEd (ad hominem), FFPath (Hon), RCPI, FMedSci

Designation:

Co-Investigator

Organizations:

University of Leeds

Discipline:

Pathology

Yorkshire Cancer Research Centenary Professor of Pathology

Honorary Consultant Histopathologist, Leeds Teaching Hospitals NHS Trust, Leeds, UK

Cynthia Sears, MD

Co-Investigator

Organization: Johns Hopkins University School of Medicine and Bloomberg School of Public Health
Cynthia Sears, MD Cynthia Sears, MD
Meet Cynthia Sears, MD

Cynthia Sears, MD

Designation:

Co-Investigator

Organizations:

Johns Hopkins University School of Medicine and Bloomberg School of Public Health

Discipline:

Medicine; Infectious Diseases; Immunology

Professor of Medicine, Oncology, and Molecular Microbiology & Immunology

Jodi Hirschman, PhD

Research Program Manager

Organization: Dana-Farber Cancer Institute
Jodi Hirschman, PhD Jodi Hirschman, PhD
Meet Jodi Hirschman, PhD

Jodi Hirschman, PhD

Designation:

Research Program Manager

Organizations:

Dana-Farber Cancer Institute

Discipline:

Cancer microbiome

Patient Advocates

Laura Porter, MD

Co-Investigator, Patient Advocate

Organization: Independent medical advisor and patient advocate
Meet Laura Porter, MD

Laura Porter, MD

Designation:

Co-Investigator, Patient Advocate

Organizations:

Independent medical advisor and patient advocate

Discipline:

Medicine; Advocacy

Dr. Laura Porter is a stage IV colon cancer survivor and has worked as a patient advocate in a variety of roles, including research advocacy, grant reviews, as a Medical Advisor for advocacy organizations, educational support, support groups, one-on-one support, and writing blogs for advocacy organizations.  

As a research advocate, she serves on the NCI Rectal-Anal Task Force, and the Patient Advocate Steering Committee. She serves on several committees with ASCO including the Onco-PCP Task Force, to incorporate primary care and oncologists so the survivors have appropriate follow-up, once treatment ends.  She is on two panels with the National Quality Forum including being on the Opioid Technical Expert Panel.  She reviews grants as a patient advocate for Cancer Prevention and Research Institute of Texas (CPRIT), Conquer Cancer and the Colorectal Cancer Alliance.  She is a Special Government Employee at the FDA. She is currently a Co-Investigator on an international grant through Cancer Research United Kingdom, team OPTIMISITICC. She is responsible for the recruitment and management of the patient advocates on the project.

Meet Anita Mitchell Isler

Anita Mitchell Isler

Designation:

Patient Advocate

Website URL:

http://www.colonstars.org

Anita Mitchell Isler was diagnosed with IV colorectal cancer at 41 years old. After learning more about her disease and family history she was determined to try to save others from this mostly preventable disease. 

Her advocacy started at her children’s school, when she started a Dress in Blue Day to build awareness about the disease and guidelines. This is now held across the country on the first Friday in March. 

She is a tireless advocate for colorectal cancer patients. She is the founder of Washington Colon Cancer Stars, a 501c3 which focuses on education for prevention and patient support. She has received various national awards for her work including Prevent Cancer Laurel of Advocacy Award, Colorectal Cancer Alliance (CCA) Visionary Award, National Colorectal Cancer Round Table (NCCRT) Blue Star award and local Rotary Self above service awards

She has volunteered for CCA as a buddy for 14 years and is a FCRC research advocate.

You are likely to find her wearing the Polly Polyp costume giving tours through the colon or sitting beside a newly diagnosed colorectal cancer patient. In her spare time, she is helping to raise 3 stepchildren in Woodinville Washington and enjoys spending time with her three grown children. 

Meet Candace Henley, CPN

Candace Henley, CPN

Designation:

Patient Advocate

Website URL:

http://www.thebluehatfoundation.org

Candace is an accomplished Foundation Executive Director with significant experience in community outreach and patient education. Superior record of successful community service and engagement. Candace is a 14-year colon cancer survivor who works to help other cancer survivors make sense of the disease as well as publicly share her story of a challenging battle with a positive attitude and faith that inspires others to never give up. Her greatest fight was against the tragic turn of events that her life took after her cancer diagnosis, which overwhelmed her, robbed her of hope, tested her faith, and threatened her with defeat. Her story will make you sad, angry, cry and cheer because it's an incredible example of perseverance and strength.

Candace advocates for “Removing Barriers for Colorectal Cancer Screening Act (H.R.1070 — 113th Congress (2013-2014), 114th Congress (2015-2016), and reintroduced H.R.1017 - Removing Barriers to Colorectal Cancer Screening Act of 2017 115th Congress (2017-2018). A Lobbyist for Right Scan Right Time, more specifically “Access to Medical Imaging” asking Congress to enact policies to save lives by expanding patient access to existing imaging technology which is a vital part of the early detection, diagnosis, and treatment of disease.

After years of advocating, Candace identified a need for grassroots awareness and education of colorectal cancer in communities of color and medically underserved communities, she started the Blue Hat Foundation in 2015. The organization utilizes community partnerships with healthcare providers, physicians, and hospital systems to deliver the message of the importance of getting screened and created and organized a faith-based colon cancer awareness campaign, Blue Hat Bow Tie Sunday, now in its 8th year. Candace has shared her story with national audiences on The Steve Harvey show, and with Katie Couric. She has contributed to several articles regarding colorectal cancer and has several articles written about her cancer journey and her tireless advocacy.

Meet Barry Stein, B.Com., B.C.L., LL.B.

Barry Stein, B.Com., B.C.L., LL.B.

Designation:

Patient Advocate

Website URL:

http://www.colorectalcancercanada.com

Barry sits on the Board of Directors of several corporations, not-for-profit organizations and foundations including Colorectal Cancer Canada, Donald Berman Foundation, Exactis Innovation, Tikva Children’s Foundation and Anzie Accessories & Design Inc. 

He is a member the Board of Directors (Observer) of Quebec Clinical Research in Oncology (Q-CROC) and a member of the Board of Directors of the Canadian Personalized Healthcare Innovation Network (CPHIN). He is also a patient advisor to Alberta’s O2 Oncology Outcomes Real World Evidence Project. 

Barry is the president and a Director of the Coalition Priorité Cancer au Québec. He is a founding member of the Canadian Partnership Against Cancer’s National Colorectal Cancer Screening Network (NCCSN). He also currently chairs the IQVIA Advisory Council for the Advancement of Health in Quebec.

As the president and CEO of the Colorectal Cancer Canada (CCC) he actively represents the interests of cancer patients and speaks regularly to medical professionals, industry, government, and patient groups across Canada and Internationally about colorectal cancer, Patient Values and Preferences in Health Technology Assessment, Clinical Trials and Real World Evidence, Young Adults with Cancer, Personalized Medicine and Companion Diagnostics, Biosimilars, Colorectal Cancer Screening, Foods that Fight Cancer and other CCC programs and research projects.

Marielle Santos McLeod, CPN Marielle Santos McLeod, CPN
Meet Marielle Santos McLeod, CPN

Marielle Santos McLeod, CPN

Designation:

Patient Advocate

Marielle was diagnosed with young onset Stage III colon cancer in June 2017. After completing numerous rounds of chemotherapy is now cancer free. She holds a BA Spanish and an MHA in Healthcare Administration and has worked in the healthcare field for 13 years. 

At the time of her diagnosis and treatment, she was shocked as to how little information was available regarding colorectal cancer in young adults. After losing her job while undergoing chemotherapy, she made it her mission to bring awareness to this disease that almost claimed her life. She began her career as a Certified Bilingual Patient and Family Support Navigator at the Colorectal Cancer Alliance in June 2018. While at the Alliance, Marielle has helped collaborate with the Latino Outreach Program and oversees both the Buddy Program and Blue Hope Financial Assistance Program.

Carlos Hue, PhD Carlos Hue, PhD
Meet Carlos Hue, PhD

Carlos Hue, PhD

Designation:

Patient Advocate

Website URL:

http://www.europacolonespana.org

He received a degree in Psychology and Pedagogy by Complutense University of Madrid and a doctorate in Education by the University of Barcelona. He worked in a public Social Service Institute as a psychologist from1976 to 1999. Since 2000, he has been working as an Advisor for long life learning education in the Ministry of Education of the regional Govern of Aragon. Simultaneously, he has been teaching Psychology and Education for teachers and professors at the University of Zaragoza, and many other Universities in Spain.

In the last 15 years, he has become a specialist in Emotional Intelligence in Spain giving many courses to teachers, public employees, company employees, doctors, nurses, and patients. He has published two books about this subject, titled: ‘Emotional thought: a method for developing self-esteem and leadership’ and ‘Teachers’ wellbeing and emotional thought’.

He was diagnosed with colon cancer in 2003. In 2006 he became Vice President of Europacolon Spain which he continues to do. In this role, he has participated in many conferences and meetings and is studying about psycho oncology as well as coordinating a book for colon cancer patients that will be published by Europacolon Spain.

Lee Jones, MBA

Patient Advocate

Meet Lee Jones, MBA

Lee Jones, MBA

Designation:

Patient Advocate

Lee was diagnosed with Stage IV colon cancer in March 2004, and since undergoing several 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 to 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). Also, he is a patient advocate member of the SWOG Survivorship Committee and 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 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 and NCCN conferences.

John Barnes

Patient Advocate

John Barnes John Barnes
Meet John Barnes

John Barnes

Designation:

Patient Advocate

I am a bowel cancer survivor.  In 2000, I was diagnosed with a Dukes stage 2 bowel cancer in transverse colon following an emergency presentation with a rectal haemorrhage. 

I was born in the Cambridgeshire Fens in the East of England, I went to school in the  Midlands, and am a Business  graduate from Coventry University. I now live near Harrogate in rural North Yorkshire, UK. I had a career in industry and owned my own lighting design and distribution company for 20 years which I sold in 2015.

Since my operation I have  acted as a ‘friend’ to others who are going through similar experiences with bowel cancer. A role that I get immense satisfaction from.

I am currently a Patient Advocate for Bowel Cancer Intelligence UK and Yorkshire Cancer Research and I have represented the BCI UK at the GB Colorectal Surgeons Conference, the Public Health England Conference and also the UK Government’s cross party ‘Battle against Cancer’ Conference. I also sit on the NHS Colorectal Expert Group which is charged with producing ‘The Clinical Advice for the Commissioning of the whole Bowel Cancer Pathway’.

I now willingly give my time to try and help with the improvement of the outcome of all bowel cancer patients; I feel that I am one of the lucky ones. My personal aim is to help take the luck element out of the diagnosis and treatment of this disease.

I am married with 2 adult daughters and two grandchildren. I love travelling and seeing the world, golf, cycling, art, antiques, photography, and family history research and can trace his family back to the winning side at the Battle of Hastings in 1066!

In Memoriam

Anjo van Heijst

Patient Advocate

Anjo van Heijst Anjo van Heijst
Meet Anjo van Heijst

Anjo van Heijst

Designation:

Patient Advocate

Anjo van Heijst was our advocate from the Netherlands. She was diagnosed with incurable colon cancer with liver metastases in 2015.  She was trained as a scientist and worked for more than 25 years in the pharmaceutical industry. Her last position prior to diagnosis was project lead for manufacturing sciences and commercialization of an antibody drug substance for anticancer immune therapy.

As a patient advocate, Anjo was the coordinator of the working group WIWO of the Dutch Foundation for Patients with Digestive Cancer (SPKS). This group works closely with leading Dutch researchers by providing patient perspectives on their colorectal cancer research proposals and by participation in research oversight meetings. Another goal of this working group is to provide Dutch colorectal cancer patients reliable and readable information, in their native language, on clinical trials.  She was also involved in the initiation of a dedicated patient organization for colorectal cancer patients in the Netherlands, and she was chair of the core team of the Bowel Cancer Working Group, Werkgroep Darmkanker.

Anjo was pleased to join our international patient advocate team and looked forward to interacting with others, exchanging views, and aiding in the development of new and better treatments to improve quality of life for colorectal cancer patients globally. She was an important and integral member of the team and will be missed by all.

Anjo passed away from colorectal cancer on March 23, 2020.

Michele Longabaugh, RN

Patient Advocate

Michele Longabaugh, RN Michele Longabaugh, RN
Meet Michele Longabaugh, RN

Michele Longabaugh, RN

Designation:

Patient Advocate

Michele Longabaugh was a wife, mother, author, and nurse who worked for a cardiac device company in Wichita, KS. In February 2010, at the age of 47, she was diagnosed with advanced, poorly differentiated Stage 4 Anal Cancer with metastasis in the sacral bone. Her prognosis was poor. After surgery to remove the sacral tumor she received an aggressive protocol of simultaneous chemotherapy and radiation, and she went into remission. Two years later a metastatic lesion was discovered in her right lung for which she underwent a right lower lobe wedge resection. Six months later two additional lesions appeared in the right lower lobe, this time in the hilar area. She was referred to a large university where she underwent chemotherapy and targeted radiation. She had no remaining evidence of disease since October 2013 and continued to be under close surveillance. After her recurrence she found meaning in her diagnosis of this rare and stigmatized cancer through advocacy work

She advocated for anal cancer victims by creating a blog, which she published. She shared her experience, writing and collaborating on journal articles with her care givers in various publications, sitting on oncology advocate boards and councils, and doing interviews for television and radio. In recent years she had turned her attention to research advocacy. Her first experience was at MD Anderson as a patient advocate on their HPV-SPORE committee. She was an active member of the NCI Rectal Anal Task Force as a patient advocate. In addition, she was the co-Education Director for PIVOT (Patients and Investigator Voices Organizing Together) at the Midwest Cancer Alliance, and she sat on their Rapid Reactor Team. She had worked with the American Cancer Society Cancer Action Network both in Topeka and Washington D.C. supporting palliative care bills and initiatives representing the patient voice. Michele was passionate about the patient survival experience, particularly minimizing the long-term side effects following treatment. She was an active member of the Peer to Peer program with the HPV & Anal Cancer Foundation supporting other patients confronted with anal cancer.  At a meeting she said she wished they had treated her like she was going to survive longer than a year and addressed the symptoms from the treatments she received. Michele was happy to join our team and was a very active and reliable member.  She will be missed by all of us.

Michele passed away June 10, 2020.

A Global Team

DFCI, HSPH, BWH

 

 

University of Oxford

 

Johns Hopkins University

 

Hubrecht Institute

 

University of Leeds

 

University of Guelph

 

Vall D’Hebron Institute of Oncology

BC Cancer Research

 

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