ANNUAL REPORT
2023
“I am an IBD champion so that tomorrow’s patients will have no barriers to achieving their educational and professional goals.”
- Donna R. Cryer, JD
IBD Patient, President of Global Liver Institute (GLI), and COGI Board Member
Letter from the President and Founder, Melodie Narain-Blackwell
To our valued Supporters and Stakeholders, In 2023, COGI experienced remarkable growth and success, surpassing our expectations. The trust and faith of our friends and partners fueled our energy and determination, enabling us to achieve incredible milestones. True to the spirit of “Can’t Stop, Won’t Stop,” we persevered through the ongoing pandemic by adapting our programs and services to be accessible to everyone, regardless of their location or circumstances.
We expanded our offerings of programs, resources, and support services for individuals living with Crohn’s disease and other digestive illnesses. This included initiatives such as Born to Be a Star, Equity In GI, #InLivingCOGI, COGI Community Conversations, Advocating for the COGI Culture (AFTCC), Comin’ In H.O.T and our newsletter, The ChronicLy. The contributions and unwavering support of our donors, volunteers, and partners were instrumental in our achievements throughout 2023.
Looking ahead, we have several goals for Color of Gastrointestinal Illness. We aim to continue expanding our outreach efforts to reach more people needing support and resources. Additionally, we plan to enhance our educational programs and services to provide our community with the most up-to-date information and opportunities. We are also committed to increasing our local and national advocacy efforts to address the systemic issues impacting individuals and families of color living with digestive illnesses.
As we continue this journey, we encourage you to remain engaged and involved with COGI. Your support is crucial to our success, and we are deeply grateful for every contribution.
Grateful, always for the opportunity to serve.
Melodie Narain-Blackwell President and Founder
Letter from the Board Chair, Chrissy M. Thornton
Dear Friends and Supporters,
I am pleased to share that this has been a pivotal year for our organization as we transitioned from the Color of Crohn’s and Chronic Illness (COCCI) to our new, more inclusive name – COGI! This change reflects our commitment to embracing all digestive disorders, ensuring that our mission and services reach an even broader community of patients who need our advocacy.
COGI was founded to address the unique challenges faced by individuals of color living with gastrointestinal illnesses. Our mission is to improve the quality of life for these individuals through a dvocacy, education, and support.
In 2024, our organization has made significant strides in raising awareness and providing crucial resources. Some highlights of our work include:
Expanded Outreach Programs: We have successfully extended our outreach programs to include more underserved communities, offering educational workshops and resources tailored to specific gastrointestinal disorders and the journeys of people of color. This effort has empowered patients and caregivers with the knowledge needed to manage their conditions effectively.
Research and Advocacy: Our advocacy efforts have led to increased funding for research into gastrointestinal diseases that disproportionately affect communities of color. We have collaborated with leading medical institutions to promote studies that will lead to better understanding and treatment options.
Support Networks: COGI has continued to develop robust support networks, creating safe and culturally relevant spaces for patients and caregivers to share their experiences and access genuine peer support. These networks are vital for reducing isolation and providing emotional and practical assistance.
Policy Influence: Our advocacy team has worked tirelessly to influence health policy at both the state and national levels, striving for equitable healthcare access and the elimination of disparities in treatment and care for gastrointestinal illnesses.
As we look to the future, COGI remains dedicated to making a tangible difference in the lives of those affected by gastrointestinal disorders, with a focus on health equity and access for communities of color. Our goals for the coming year include:
Strengthening Community Partnerships: We will continue to build and strengthen partnerships with local and national organizations to enhance our support services and reach more individuals in need.
Increasing Access to Care: By advocating for policy changes and working directly with healthcare providers, we aim to improve access to quality care for patients, particularly in underserved communities.
Enhancing Patient Education: Expanding our educational initiatives to ensure that patients and caregivers have access to the latest information and resources to manage their conditions effectively, and that the information is culturally engaging.
Promoting Inclusive Research: Supporting research initiatives that consider the unique experiences and challenges faced by people of color with gastrointestinal illnesses, ensuring that their voices are amplified and their needs addressed.
COGI’s work is driven by a profound commitment to those we serve. None of our accomplishments would be possible without the unwavering support of our community, donors, volunteers, and partners. Together, we are making strides towards a future where everyone has access to the care and support they need, and we will keep pushing forward unapologetically.
Thank you for being a part of our journey. We look forward to continuing this important work with you by our side.
Chrissy M. Thornton Board Chair Color of Gastrointestinal Illness (COGI)
2023 Corporate Sponsors
CHAMPION SPONSORS
FRIEND OF COGI
COGI Staff
Melodie Narain-Blackwell Founder & President
Sharnea Cooper Sr. Executive Administrator
Marilyn Sawyer Director, Events + Communications
Tomiyo Williams Manager, Community + Advocacy
Nakia Thomas Manager, Events
Mesha Persaud Administrative Coordinator, Operations
Dasja Foster Assistant, Events
Dominique Daniels Coordinator, Community + Ambassador
COGI BOARD
Melodie NarainBlackwell COGI President & Founder
Matthew Tranguch
Board Member
ThirdEye, Growology, and Paperboy Media Group Founder, Product & Managing Partner
Julia Liu, MD
Chair, Medical Advisory Board Member
Morehouse School of Medicine Chief, Division of Gastroenterologist
Donna Cryer, JD
Board Member
Global Liver Institute, President & CEO
Chrissy Thornton, MBA Board Chair
Associated Black Charities Chief Executive Officer
Jeffrey Anders, JD Board Member
Jeffrey Anders Government Strategies LLC Founder and Principal
Sophia Balzora, MD
Board Member
The Association of Black Gastroenterologists and Hepatologists (ABGH) & NYU Langone Health
President/Co-Founder & Gastroenterologist
Prince Daniels Jr.
Board Member
Retired NFL Player, Speaker, Entrepreneur
COGI Medical Advisory Board
Dr. Joshua Anthony
Psychiatry Resident, DOCNATION
Dr. Sameer Berry
Chief Medical Officer, Oshi Health
Dr. Jonathan Laryea
Colorectal Surgeon, Professor of Surgery and Chief of the Division of Colon & Rectal Surgery in the Department of Surgery at the University of Arkansas for Medical Sciences (UAMS)
Dr. Bo Shen
Gastroenterologist, Director of the IBD Center at Columbia, Vice Chair for Innovation in Medicine and Surgery, and a Professor of Medicine (in Surgery)
Dr. Adjoa Anyane-Yeboa
Gastroenterologist, Massachusetts General Hospital
Dr. Sonia Friedman
Gastroenterologist, Brigham and Women’s Hospital, Associate Professor of Medicine, Harvard Medical School
Dr. Julia Liu
Chief, Division of Gastroenterologist, Morehouse School of Medicine
Dr. Thaddeus Stappenbeck
Chair, Department of Inflammation and Immunity Cleveland Clinic Foundation Cleveland, Ohio
Dr. Samuel Arce
Primary Care Physician, Chairman of the Board at National Hispanic Medical Association
Dr. Sarah Glover
Professor of Medicine and Section Chief C. Thorpe Ray MD Chair in Medicine, Division of Gastroenterology and Hepatology Department of Medicine, Tulane University
Dr. Edwin McDonald IV
Gastroenterologist, Assistant Professor in Medicine, University of Chicago Medicine
Dr. Judith Volcy
Chief of General Medicine, Associate Professor of Medicine, Morehouse School of Medicine
Dr. Sophie Balzora
Gastroenterologist, NYU Langone, Co-Founder, ABGH
Dr. Ugo Iroku
Gastroenterologist, New York Gastroenterology Associates
Dr. Leybelis Padilla
Gastroenterologist, Naval Medical Center San Diego
COGI
ORIGIN
Melodie Narain-Blackwell was diagnosed with Crohn’s disease in 2018, after living with IBD symptoms for almost 30 years. After creating a facebook group to support a clearly identified gap, lack of inclusion of black and brown people in all areas of IBD, Color of Crohn’s and Chronic Illness was born. In 2020, COGI became a fully designated 501c3 organization that would lead the charge in supporting an unserved community.
COGI
MISSION
To improve the quality of life for BIPOC who are affected by IBD, Digestive Disorders and associated Chronic Illnesses; through Community, Research, Education, and Advocacy.
“We can live, we can thrive, we can do it all. When I thrive, you thrive. There’s always hope and I hope that people can feel that and understand that.”
- Tyler James Williams, Actor, Influencer, and IBD patient in conversation with COGI.
An equitable healthcare system freed from the seeds of racism, providing the space and opportunity for all individuals to be regarded as such, to have their care delivered based on needs and best opportunities for optimal outcomes. COGI
VISION
COGI
VALUES
Integrity. Compassion. Empowerment. Courage. Equity.
“By learning to advocate for myself, I’ve learned that I can do research on my condition and bring information to the table that I and my doctor can discuss together, and we can work as a team.”
- Nastassja Brown, COGI Patient Advocate
Ambassadors and Advocacy PART 1
We Brought Our Ambassadors to DC!
In 2021, COGI hosted the first Advocating for the COGI Culture (AFTCC) training program. The online platform grew to over 300 members with many members expressing gratitude and sharing their stories. With the world being heavily impacted by COVID-19, it was clear that programming would have to be virtual and creative.
With a growing demand for opportunities to connect and engage, the Ambassador Program was implemented in 2020 to increase advocacy and awareness efforts, and to advance the mission and vision. COGI Ambassadors have shared stories that have touched on the economic burden of their diseases, the importance of understanding public policy, the day-to-day consequences of managing IBD/chronic illnesses, the psychosocial challenges (including work, marriage, and others), mental health, and much more.
Kimberly Hooks Georgia
Frank Hooks Georgia
Ava Ricks Georgia
Renika Wood North Carolina
Aarion Bell Ohio
Kita Hardy Georgia
Tionna Forchion New Jersey
Keyla Caba Massachusetts
Reynelda Solitaire Washington
Dominique Daniels Maryland
Crystal Umaru Washington, DC
Latesha Harrison-Thompson Maryland
Marquis Ellison New York
Joshua Denton Texas
What is an Ambassador?
An ambassador is an enthusiastic and dedicated chronic illness patient or professional, or the family member of a chronic illness patient, who is interested in sharing his or her time and expertise to help elevate awareness for chronic illnesses. Our ambassadors are passionate about our cause and are committed to keeping abreast of new, relevant issues that may impact the community.
The goal of the Ambassador program is to engage with policy makers, patients, and healthcare professionals in raising awareness about IBD, digestive health, and chronic illnesses within their communities, among their social networks, nationally, and globally.
COGI aims to help all people understand IBD and digestive health challenges in BIPOC communities, with a magnifier on the disparities and inequities. As an organization committed to advancing equity, we recognize the power and the value of our Ambassadors. The experiences that our Ambassadors share are inspiring and highly influential, highlighting the jarring disparity in care and treatment through real life experiences. Our Ambassadors are integral in developing the necessary pathways to shift the paradigm. We have over 44 Ambassadors, from 14+ states.
The strategic objectives of the Ambassador Program are to:
• Recruit diverse ambassadors from the IBD/ chronic illness community to engage with federal and state legislators
• Educate ambassadors about COGIs policy agenda and key policy issues (including IBD specific legislation, clinical trials/research design and participation, access issues and reimbursements)
• Provide ambassadors with tools for ongoing advocacy at the local and federal levels
• Host ambassador meetings and discussions
• Patient and Caregiver Recruitment
Ambassadors focus on strengthening their confidence in storytelling, live discussions on social media platforms, panel participation with our advocacy partners in areas pertaining to COGIs policy agenda, and grassroots advocacy. In 2022, we were able to expand to hosting live programming, which only furthered the engagement of our Ambassadors and their commitment to storytelling, panel participation, and advocacy. Since the inception of our Ambassador program in 2021, COGI has collected 50+ stories.
Highlighted are some early successes of the program:
Our COGI Ambassadors serve a vital role, working with COGI staff as a complement to COGI’s ongoing policy and advocacy program.
Through membership and participation in numerous coalitions of patient advocacy organizations, as well as direct engagement with policymakers at the federal and state levels, in 2022 COGI continued to promote policy solutions that are designed to respond to ongoing threats against the health and wellbeing of communities that experience health disparities, build on the coverage gains made under the Affordable Care Act (ACA), and ensure access to quality, affordable health care for all.
THESE INCLUDE:
• Copay Accumulators
• Step Therapy
• Non-Medical Switching
• Prior Authorization
• Out-of-pocket Costs
COGI Ambassadors deepen their understanding and engagement in areas that influence decision makers and affect legislation, including:
• Awareness of IBD’s true burden among policymakers
• Access to affordable, effective treatments
• Investment in public health and federally supported research to better understand and treat IBD.
With regard to access to care, COGI strongly believes that the treatment that people use to manage their IBD is a decision that belongs to the patient and his/her health care provider, and only the two of them.
Throughout 2022, COGI was actively involved in efforts to control utilization management and other health insurance cost-cutting measures that interfere with the patient and his/her doctor’s ability to make the best choices about patient health.
COGI continued to advocate for the Health Equity and Accountability Act (HEAA). HEAA is a comprehensive, broadly supported legislation that aims to reduce ethnic and racial disparities in access to health care and outcomes. Since its initial introduction over a decade ago, HEAA has provided a principled, comprehensive and strategic plan to eliminate health disparities and improve health outcomes for susceptible communities.
COGI also advocated for The Safe Step Act. Legislations that would strengthen access to care by requiring employer health plans to establish a clear and expedient exceptions process including circumstances in which patients should be approved to skip step therapy protocols when the protocols are medically inappropriate.
A Real A Picture Of Health
A campaign showcasing COGI’s Advocacy Priorities and the patients focused on change.
Tionna Forchion
Priority: Access to Care
Utilization: Non-Medical Switching
Tionna Forchion’s story touches on the trial and error of finding a medication that could stabilize her Crohn’s disease. Once she found a medication that worked, she had to stop the medication because her insurance would no longer cover the cost. This challenge made her feel like, “money mattered more than her life”.
LaTesha Harrison-Thompson
Priority: Medical Nutrition Equity Act
Latesha Harrison, speaks about being diagnosed with Crohn’s disease at 5 years old and her challenges with maintaining adequate nutrition due to insurance parameters.
Joshua Denton
Priority: Access to Care
Utilization: Co-Pay Accumulator
Joshua Denton’s journey focuses on navigating the cost of medicine to manage his Ulcerative Colitis. Between high deductibles and the cost of medication, there were times he had to find creative ways to stretch his doses -- and even missed doses until he had access to pay for his medication.
Dominique Daniels
Priority: Restroom Access Act
Dominique Daniels shares her story about being an Ulcerative Colitis patient and her challenges with public restroom access. While The Restroom Access Act (also known as Ally’s Law or the Crohn’s & Colitis Fairness Act) was passed in 2005 by several states, many have not enforced compliance of the law. Other states still have not passed a law leaving patients like Dominique with limited safe spaces.
Panels
COGI Ambassador Kita Hardy participated in a panel discussion on disparities in health care at the 2022 National Policy and Advocacy Summit on Biologics, sponsored by the Biologics Prescribers Collaborative. The Summit featured health care providers, policy experts, and patient advocates, and explored how sound public polices can facilitate the safe use of biologics in patient-centered care.
Communications & Amplification of Black Digestive PART 2
#InLivingCOGI
Crohn’s & Colitis Awareness Week (Dec 1-7)
• Increased awareness of IBD in black/brown communities with scheduled events for 7 days
• Live social media discussions to empower patients to share their stories
• ~10 Media Interviews
• 2020 Reach: 36,379
• 2021 Reach: 112,698
• 2022 Reach: 77,964+
• 2023 Reach: 102,500+
• 2023 Event Attendees: 107
The ChronicLy:
Our monthly newsletter focuses on patient stories and community resources, sharing COGI programs and events, and providing industry updates. The ChronicLy also highlights COG’s advocacy efforts, patient education, and organization update.
Newsletter Stats:
3,600+ Active Subscribers
Above average open rate of 38%
#WithAnOstomy Campaign:
During the course of inflammatory bowel disease (IBD), surgery may be needed. Approximately 20% of patients with ulcerative colitis (UC) will require surgery, whereas up to 80% of Crohn’s disease (CD) patients will undergo an operation during their lifetime1 This program is focused on highlighting our community members with ostomies and showing their value. We highlight our ostomates annually on October 1st with images, stories, and live conversations.
1 Sica, G. S., & Biancone, L. (2013). Surgery for inflammatory bowel disease in the era of laparoscopy. World journal of gastroenterology, 19(16), 2445–2448. https://doi.org/10.3748/wjg.v19.i16.2445
A LOOK AT THE COGI NUMBERS
60
VOLUNTEERS
29
PHYSICIAN PARTNERS
13
PROFESSIONALS/ CONSULTANTS
Non-Profit Advocacy Partners
Other Partners:
TYLER JAMES WILLIAMS, ACTOR & PATIENT ADVOCATE
Convening Stakeholders to Advance Equity PART 3
Digestive Research and Education Excellence Aimed at Minorities (DREAM) Conference
In collaboration with Morehouse School of Medicine, the DREAM Conference was held on December 8-9, 2023, in Atlanta, GA, with a focus on Digestive Research and Education Excellence Aimed at Minorities. At this exceptional event, various opportunities to remove barriers and advance science for Black and brown communities were discussed. It was emphasized that collaborative efforts, such as the one that took place that day, were essential in achieving the ambitious goals necessary to bring about health equity.
• Patients
• Providers
• Industry
• Advocacy Partners
Sponsors
Patient Empowerment & Community Engagement PART 4
Equity in GI 2023
Hosted in Atlanta, GA from July 6th through July 8th, Equity in IBD turned into Equity in GI, focusing on IBD, CRC, Nutrition and Weight Management, and Mental Health. We expanded the programming to two and a half days of provider and patient education.
• 252 Total Participants (41% were patients and care partners)
• Participation of physicians from George Washington University, Johns Hopkins University, Morehouse School of Medicine, NYU Langone, Massachusetts General Hospital, The Ohio State University and more
• Sponsored by Johnson & Johnson, Takeda, AbbVie, Bristol Myers Squibb, Boehringer Ingelheim, Lilly, Pfizer, Genentech, Kenneth Rainin Foundation, Healios, and ABGH.
• Over 14 patient advocacy organizations participated as partners
Community Conversations
COGI Community Conversations HBCU tour is an exclusively unique program that creates partnerships with and brings awareness to HBCUs regarding both digestive diseases and mental health. We believe our program meets the college community where they are while educating them in a manner that is fun and “digestible.”
In our launch year of 2022, COGI established relationships with four accredited universities: Hampton University in Virginia, Xavier University of Louisiana, North Carolina Agricultural and Technical State University (NC A&T), and Virginia State University (VSU). In 2023, COGI expanded it’s reach, visiting the University of Maryland Eastern Shore (UMES) in Maryland, Howard University in Washington, DC, and Delaware State University (DSU) in Delaware.
The Impact of COGI Community Conversations
• For many student attendees, COGI Community Conversations was their first health education event. These students do not usually have this type of access to health information and there is rarely, if any, information on Digestive or Mental Health.
• Raised awareness among HBCU students and administrators about chronic illnesses and their impact within their communities.
• Students were encouraged to seek further medical care/intervention beyond the program.
• Attendees reconsidered their views regarding clinical trials.
• Attendees felt more compelled to intentionally manage their health.
Advancing PART 5
NOVEMBER
Born To Be A Star Research Soriee
Color of Gastrointestinal Illnesses hosted its second Annual Born To Be A Star Research Soirée on November 5, 2023. The event raises funds to support research and advance science and medicine for equitable patient care in the field of digestive diseases. In just three years, COGI has raised over $120,000.
In 2023, COGI presented the inaugural Bryce A. Jones Award in memory of his life and battle with colorectal cancer. COGI now recognizes an Ambassador of the Year. LaTesha HarrisonThompson was the recipient of the first Ambassador of the Year Award in 2023.
Research Grants
Isolation of yeast that colonize fistulae in Black Crohn’s disease patients.
Thaddeus Stappenbeck
Cleveland Clinic
$50,000
IBD Phenotypes And Outcomes in Black And Latinx Patients: A Multicenter Longitudinal Study
Florence-Damilola Odufalu
Keck School of Medicine of USC
$50,000
Count Me In(cluded) (CMI)
Help patients of color better understand medical research studies and connect to studies for participation:
• Develop a comprehensive Studies and Research page on the COGI website
• Deliver a monthly video podcast regarding medical research
• Produce a monthly newsletter, “Regarding Research”
• Support research studies and recruit participants from Black and Brown communities
Pledge numbers
Hampton University: 52 Students
Xavier University : 147 Students
North Carolina Agricultural and Technical State University: 59 Students
Virginia State University: 109 Students
University of Maryland Eastern Shore: 114 Students
Delaware State University: 126 Students
Howard University: 72 Students
The Huddle
A space for men in the IBD community to gather together to share their thoughts and experiences with IBD. Patients, Care Partners, and Family members are welcome.
Together IBD
A support group for the IBS/IBD Community, focused on black and brown patients-the only one of its kind. This support group provides a safe and protected environment for patients in our community to share their feelings about their diagnosis and how they navigate their daily lives.
PATIENT SUPPORT GROUPS
Meet The Medic
Monthly Candid conversations with medical professionals. Patients are able to connect with HCPs (based on monthly topics) to gain insight and education. They are able to ask questions and discuss best practices for communicating with HCPs. This program’s goal is to get patients, who are underserved, in front of HCPs to gain insight about these particular providers and encourage healthier communication with HCPs, as well as better health care management and a commitment to preventative health measures. This program also works to create a bridge for patients to trust the healthcare system through providers that believe in patientcentered care.
CORE
C.O.R.E. is a safe and supportive space for young adults with digestive health issues to come together and share their experiences, learn from each other, and find support.
At our meetings, we will discuss:
• Coping with the physical and emotional challenges of digestive health issues
• Managing your condition on a daily basis
• Finding and maintaining relationships
• Advocating for yourself and your needs
• Living a full and meaningful life with a digestive health issue
This support group is open to all young adults between the ages of 18-25, with digestive health issues, regardless of the specific condition you have. Whether you have been diagnosed recently or have been living with your condition for many years, you are welcome here.
POPPin
Raising a child with a digestive disease can be challenging and isolating. POPPin, is a support group where parents and caregivers of pediatric patients with a digestive disease can receive support from others, reduce feelings of loneliness, and connect with others who can relate to you and your family.
At our meetings, we will discuss a variety of topics, including:
• Coping with the emotional and practical challenges of parenting a chronically ill child
• Managing your child’s condition on a daily basis
• Communicating with your child’s doctors and other healthcare providers
• Advocating for your child’s needs
• Discuss the impact on the family dynamic such as siblings, spouses, extended family, etc.
• Maintaining your own physical and emotional health
We will also have guest speakers from time to time, such as psychologists, social workers, and medical experts, who can share their expertise and answer your questions.
Ostochat
OstoChat, COGI’s premiere support group for ostomates of all kinds. OstoChat is designed to bring the black and brown people of the ostomy community together to share tips, advice, and to just chat about their experiences living with an ostomy.
Comin’ In
(Health, Opinions, and Truths)
PODCAST
A collaboration between the Association of Black Gastroenterologists and Hepatologists (ABGH) and COGI, this special segment of COGI’s “Comin’ In Hot” gave us a chance to sit down with Golden GlobeAward winner and Emmy-nominated actor Tyler James Williams of Abbot Elementary, Everybody Hates Chris, and more.
Also a Crohn’s patient advocate, Tyler joins ABGH President and Co-founder Dr. Sophie Balzora, COCCI President and founder Melodie Narain-Blackwell, and Rwenshaun Miller, psychotherapist and founder of Eustress Inc., to discuss the importance of addressing mental health in IBD and how it can positively impact the patient care journey, including the relationship between the provider and patient.
A Look Ahead
CAMPAIGNS
#WithAnOstomy (Ostomy Awareness Day)
In Living COGI Week (Crohn’s & Colitis Awareness Week)
A Real Picture of Health Campaign
EVENTS
Advocating For The COGI Culture
Born To Be a Star Research Soiree (Advancing Equity in Research & Science)
Community Conversations (College Student Education Seminars)
The Appetite: It Goes Down in the GI
Equity in GI 2024 Patient Conference
PROGRAMS
Count Me (In)cluded (CMI)
Care Connections
“Meet the Medic” (Equity)
“Just Minding” (Equity)
PATIENT SUPPORT GROUPS
Together IBD
COGI Book Club
The Huddle
POPPin (Parents of Pediatric Patients)
Osto-Chat
Cafe Conversations with COGI
Financial Statements
