samarah2 – Forge AHEAD Center

Addressing racism in cardiometabolic health research

Pennington Biomedical Research Center hosted Michele Allen, M.D., and Kene Orakwue, MPH for the Forge AHEAD April seminar where they presented on their innovative approaches to combatting health disparities, building on a framework that acknowledges the deep impact that racism has on health outcomes.

Allen, associate professor at the University of Minnesota Medical School and MPI for the C2DREAM Center, provided an in-depth overview of the center’s objectives and methods, emphasizing their proactive stance against racism in health research.

She noted, “We are striving to advance this field… We have significant partnerships with indigenous groups, reflecting our commitment to anti-colonial perspectives and the parallels among indigenous, Black, and immigrant communities.” This underscores the center’s dedication to inclusivity and diversity in health research, acknowledging various dimensions of racism and colonial impacts.

Allen further emphasized the critical need for incorporating a framework that considers racism in health research, stating, “To dismantle racism, we must understand how it functions and manifests, not only within communities but also within our research endeavors.

It is essential for health equity researchers to consider racism both as a social determinant of health and in how it influences our research methodologies.” This serves as a crucial reminder of the systemic nature of racism and its extensive impact on health disparities.

Structural racism and its impact on health outcomes

Orakwue, doctoral student at the University of Minnesota Twin Cities, enhanced the dialogue by introducing a detailed framework demonstrating how structural racism affects health outcomes. Orakwue stressed the need for a structural analysis of racism, stating, “It’s crucial to consider racism at a structural level, as health inequities often emerge not just from momentary snapshots but from longstanding systemic issues.” This insight is vital for understanding the prolonged and systemic nature of health disparities driven by racism.

Orakwue also highlighted the complexity of racism, adding, “Racism manifests in various forms; it upholds white supremacy and different oppressive systems, depending on the targeted population… How do we start to address these multifaceted issues?” Her discussion points to the need for a comprehensive approach to tackle racism effectively.

Concluding insights

In her concluding remarks, Allen emphasized the significance of these discussions and frameworks in progressing the battle against health disparities. She affirmed, “This work is foundational to our operations and essential for our continuous efforts to effectively address racial inequities in health. We must persistently refine our understanding and methodologies to ensure our research and interventions are both effective and equitable.”

Facilitating ongoing dialogues on health inequity

These insights from C2DREAM resonate deeply with Forge AHEAD’s mission to challenge health inequities through informed and inclusive research methodologies. By sharing and deliberating on these strategies, Forge AHEAD seeks to deepen the community’s understanding of and engagement with these critical issues.

Engage and discover more

Forge AHEAD invites the community to participate in the upcoming fall seminar series, designed to further explore these and similar themes. This series provides a platform for community members, researchers, and policymakers to actively engage with the challenges and progress in addressing health disparities influenced by systemic racism. We also encourage viewing the recap of our seminar presentations to gain additional insights into how these discussions are evolving and influencing our approach to health equity.

Forge AHEAD is dedicated not only to discussing these issues but also to implementing practical and impactful strategies that address them at the systemic level, ensuring a healthier future for all communities. Join us in this pivotal conversation and be part of the change.

View the recording of the May seminar below:

Our Scholars’ stories: Lai tests virtual reality gaming exercise benefits at a local high school for youth with disabilities

Lai tests virtual reality gaming exercise benefits at a local high school for youth with disabilities

Byron Lai, Ph.D., assistant professor in the Division of Pediatric Rehabilitation Medicine at the University of Alabama at Birmingham, is researching a new way to help children with disabilities stay healthy.

Lai’s project, “Preliminary implementation and development of an enjoyable virtual reality exercise program for the prevention of cardiometabolic disease among children with disabilities in school settings,” allows participants to do their rehabilitation exercises through video games.

The goal is to see if virtual reality gaming and exercise can help children with disabilities avoid health problems related to their heart and metabolism.

Video games that improve health

“The purpose of the project is to work with a community engagement group to develop a protocol for implementing a research-tested therapeutic exercise program for youth with disabilities at a high school,” says Lai.

Lai is testing this exercise program in a special physical education class at a high school. He wants to see what impacts the program has on exercise-related outcomes like physical strength and how well the heart and lungs work.

A total of 12 children will be included in the study to start. This project will include a Community Engagement Group of three members from the school where the intervention will be delivered, a child with cerebral palsy, their caregiver, and a Special Physical Education teacher.

“The project is being supported by school staff and, most importantly, being delivered by a young man with a physical and cognitive disability, who was a student at the high school,” says Lai.

“Should this project be successful, it could open up a means for employment for youth with disabilities, when the project is delivered on a national scale. This project is also the first collaborative project with the community by the Division of Pediatric Rehabilitation Medicine at UAB and Children’s Hospital of Alabama, which could open doors for further projects and services.”

Lai says the group will meet regularly to talk about how the program is delivered and what changes might be needed.

If this study shows the exercise program works well, Lai will use the study results to apply for additional funding to conduct a larger study to confirm if it really helps kids with disabilities stay healthy. “This project will serve as a model for helping other schools in a larger trial,” he says.

The findings of this study will inform an upcoming NIHR01 application to confirm the effectiveness of the virtual reality exercise program on cardiometabolic health among children with physical disabilities.

Our Scholars’ stories: Cardozo explores the link between PCOS and cardiovascular disease

Cardozo explores the link between PCOS and cardiovascular disease

Licy Yanes Cardozo, M.D., associate professor at the University of Mississippi Medical Center, is delving into the interesting connection between Polycystic Ovary Syndrome (PCOS) and cardiovascular disease.

PCOS is a common hormonal disorder affecting women of reproductive age, characterized by high levels of male hormones and irregular menstrual cycles.

While the exact cause of PCOS remains unknown, it’s evident that women with this condition face an increased risk of cardiovascular issues. Cardiovascular disease is the leading cause of death in women in the U.S.

Notably, Black/African American women with PCOS are at an even higher risk of cardiovascular complications, though the reasons for this racial disparity are not fully understood. Social determinants of health (SDoH), such as education, employment, income, and food security, could play a significant role.

Cardozo’s why

“Women’s health suffers from numerous inequities, especially in the South,” Cardozo says. “As a woman and a mother of two girls, I am passionate about using my voice, knowledge, and energy to improve cardiovascular health among women.”

Moreover, Cardozo states: “cardiovascular diseases are the leading cause of death among women, thereby this is a key area of research. I hope that the findings of our research make a positive impact on the community, filling the multiple gaps that exist in our understanding of cardiovascular diseases in women, especially among African Americans.”

The project plan

Cardozo’s team aims to investigate how SDoH contribute to cardiovascular risk factors in Black/African American women compared to white women with PCOS, and how this correlates with hormonal imbalances and dysregulation of factors affecting blood pressure and metabolism.

As a physician-scientist, Cardozo says she seeks to determine whether SDoH are responsible for the elevated cardiovascular risk observed in Black/African American women with PCOS.

Her study will utilize questionnaires to assess SDoH, analyze blood samples related to cardiovascular disease, and examine obesity as a contributing factor.

The findings from this research endeavor are expected to provide deeper insights into effective treatments for managing cardiovascular disease in Black women with PCOS.

Cardozo anticipates that this study will lead to improved strategies for addressing cardiovascular issues in women, particularly among those who face disproportionate risks, such as Black/African American women with PCOS.

Championing Black Maternal Health

At Forge AHEAD, we are committed to confronting the grave health disparities faced by Black mothers with both urgent action and long-term science-based approaches to address these health disparities. We recognize that addressing the health disparities impacting Black mothers is both a matter of public health and of justice and equity. During Black Maternal Health Week, we spotlighted the stark realities and promising interventions through the voices of experts dedicated to making a difference. Here’s how we’re advancing this vital work:

Combating maternal mortality

“Black women are three times more likely to die from a pregnancy-related cause than White women,” a troubling statistic that underscores the urgent need for targeted interventions.

Sharon J. Herring, M.D., director of Population Health at Temple University, illuminated the stark disparities in maternal mortality rates during her presentation at the Forge AHEAD February Seminar, She emphasized the necessity for approaches rooted in community engagement: “Our communities need tailored, empathetic solutions that address the real experiences of Black mothers. By engaging directly with these communities, we can start to dismantle the systemic barriers that contribute to these devastating disparities.”

Empowering teen mothers

Addressing the disproportionately high birth rates among Black teens, Abigail Gamble, Ph.D., Forge AHEAD scholar from the University of Mississippi Medical Center, introduced the #BabyLetsMove initiative, leveraging technology to empower pregnant adolescents: “Technology isn’t just a tool; it’s a lifeline that can empower young Black mothers. Through our #BabyLetsMove initiative, we’re turning everyday devices into sources of strength, education, and community.”

Addressing food insecurity head-on

With 1 in 5 Black Americans facing food insecurity—a rate twice that of white households—the impact on maternal health is significant.

Candice Myers, Ph.D., Forge AHEAD scholar at the Pennington Biomedical Research Center, and her TARGET intervention directly addresses this: “Food insecurity is more than just an empty plate; it’s a complex challenge that pregnant women face, which can have long-term effects on their health and the health of their children. Our TARGET intervention is designed to break this cycle through personalized nutritional and psychological support.”

Shaping policy through nutritional interventions

Camille Schneider-Worthington, Ph.D., Forge AHEAD scholar at the University of Alabama at Birmingham leading a study on the impact of home-delivered meals, discusses a potential policy-changing approach: “By delivering meals directly to expectant mothers, we’re not just nourishing them; we’re testing a model that could reshape how maternal health support is structured, ensuring that no mother has to worry about her next meal during pregnancy.”

Doula support and advocacy

Advocate and doula, Frankie Robertson, founder of The Amandla Group LLC, passionately advocates for comprehensive support systems for Black birthing people, emphasizing the critical role of doulas in maternal health. The FAC Community Engagement Core is proud to partner with Frankie and the Amandla Group on their advocacy work, which exemplifies the power of support and advocacy in transforming care for Black mothers. “Advocacy in maternal health isn’t just about speaking up; it’s about acting and ensuring that Black birthing people have the support they need during one of the most vulnerable times in their life. Through our work, we aim to turn advocacy into actionable change that makes a tangible difference in the lives of mothers,” says Robertson.

These insights from Black Maternal Health Week are calls to action. Forge AHEAD is committed to integrating these lessons and models into our ongoing efforts to improve maternal health outcomes. By supporting innovative research, advocacy, and community-driven solutions, we aim to address the complex factors contributing to health disparities and work towards a future where all mothers have the support they need to thrive.

Engage with us

Your involvement is crucial. Join us in supporting these initiatives, learn more about our work, and help us expand the conversation about maternal health equity. Together, we can create lasting change for Black mothers and their families.

Gardening for Health: SILC Project Cultivates Wellness in Deep South

Across Alabama and Mississippi, the Stepping into Lifestyle Changes (SILC) project is flourishing, proving that the simple act of gardening can yield far more than beautiful landscapes. With just a bit of soil, a handful of seeds, and a commitment to nurturing growth, SILC is demonstrating the profound ability of gardening to enhance lives beyond aesthetics. As we celebrate National Gardening Month, SILC embodies the remarkable power of community, innovation, and deep-seated dedication to promoting health and well-being.

Seeds of Change: SILC’s Journey

At SILC’s core are stories of personal growth and collective empowerment. Charlotte Love, the project’s study manager, recounts a particularly inspiring tale: “A participant started the program feeling discouraged and unhealthy. Over the course of the six months, the participant committed herself to ‘Stepping into Lifestyle Changes’. This included balanced nutrition and regular exercise. As a result, the participant lost 20 pounds and experienced a remarkable transformation in her overall well-being. She also established a network of support among the other participants.”

SILC represents an innovative approach to foster wellness in rural communities in Mississippi and Alabama. Monica Baskin, Ph.D., the project’s lead, says, “This study builds on prior research that demonstrated improved health behaviors and outcomes from a vegetable gardening intervention with both cancer survivors and persons living with other chronic conditions (e.g., heart disease, hypertension, diabetes). The study focuses on learning what factors are important with implementing and sustaining these type programs in community settings.”

Cultivating Health Locally

SILC’s success is largely due to its embrace of local culture and knowledge. Training community members as Master Gardeners sows seeds of change where most needed. “It goes beyond gardening,” Baskin states. “It’s about fostering a health culture rooted in local tradition.”

Despite its successes, SILC faces challenges, especially in engaging ample community-based master gardeners and navigating logistics of delivering gardening supplies to rural communities. However, the project’s resilience turns these obstacles into opportunities for learning and growth. Specifically, through collaborations with local Cooperative Extension Program offices, SILC has grown the number of community members that have become Master Gardeners. Certification as a Master Gardner involves completing an 8-week training and over 40 volunteer hours.

Witnessing SILC’s direct impact is a rewarding experience for Baskin. “It’s incredibly fulfilling to see participants sharing their successes — from weight loss to enjoying their harvest. It reinforces my belief in the power of community-engaged research.”

Seeding Future Policies: The Broader Impact of SILC

As the SILC project continues to bear fruit, its potential to shape health policies and community programs is immense. Baskin reflects on this aspect with optimism: “Findings from this study could inform community-based organizations and federal programs such as the Cooperative Extension Program on the factors that support the implementation and sustainability of evidence-based community-based gardening programs like this one. By demonstrating the health benefits and community engagement success of the SILC project, we hope to influence broader strategies aimed at reducing cardiometabolic diseases, making a case for integrating similar programs into public health initiatives across the country.”

Harvesting Hope for the Future

As SILC progresses, its effects are just beginning to bloom. “I hope our efforts inspire others to continue this work, spreading the benefits of community gardening and healthy living,” Baskin expresses.

In the spirit of National Gardening Month, Love and Baskin offer gardening wisdom rooted in personal and project experiences. Love suggests, “Plan early, be flexible,” emphasizing the importance of adaptability. Baskin shares her family’s gardening journey. “My now 20-year-old daughter got my family interested in gardening when she was in middle school. She was part of an ecology club where she learned how to start a container garden. We have since had one each year and have been thrilled with the outcome: delicious bountiful tomatoes, peppers, basil, thyme, and other delicacies have made it into our family recipes and have led to great memories for me and my family.”

As gardens across the country begin to flourish this National Gardening Month, the SILC project reminds us of the deep connection between our health, environment, and communities. Whether through a container garden or a community plot, each plant grown marks a step towards a healthier world.

Pathways to Combat Food Insecurity and Enhance Community Health

Seth A. Berkowitz, M.D., MPH, explored how tackling food insecurity can significantly improve health outcomes and empower communities at this month’s Forge AHEAD Center (FAC) seminar. The seminar, held at the University of Alabama at Birmingham School of Population Health, offered a deep dive into the systemic challenges and practical solutions concerning food insecurity—a pressing issue that aligns closely with FAC’s ongoing commitment to health equity and community empowerment.

In his presentation, “Food Insecurity, Diabetes, and Distributive Institutions”, Dr. Berkowitz provided a deep dive into what it means to live without reliable access to nutritious food. He described food insecurity as a “lack of consistent access to the food needed for an active, healthy lifestyle,” a daily reality that many in our communities may be painfully familiar with. “Food insecurity is principally a problem of distributive institutions,” Dr. Berkowitz shared. He emphasized that systemic issues in income distribution greatly impact access to adequate nutrition. This challenge is especially critical for individuals managing chronic conditions like diabetes, where consistent and nutritious meals are crucial for maintaining health.

Dr. Berkowitz called for a combined effort of healthcare solutions and policy changes. He spoke about the benefits of community-supported nutritional programs and policy reforms that aim to break down these barriers. To effectively tackle food insecurity, he emphasized the vital roles of community involvement and policy advocacy. He suggested advocating for improved social safety nets and fair food distribution, supporting local food banks and health programs, and educating others about how health connects with economic and social factors. By getting involved in these ways, everyone can contribute to a deeper understanding and drive meaningful change in their communities.

The insights from Dr. Berkowitz shed light on the connection between food insecurity and health and emphasize how every one of us has a part to play in addressing these challenges. The Forge AHEAD Center is dedicated to sparking change and enabling our community to achieve better health through informed collective action.

Your participation is crucial as we continue to advocate for systemic changes and pursue health equity for everyone. Join us in turning these insights into meaningful community action.

View the recording of the presentation below.

Join us at our next seminar in May, where we will host Michele Allen, M.D., MS, associate professor at the University of Minnesota Medical School and one of the leads of the C2DREAM Center (another P50 NIH-funded center part of the Health Equity Action Network), and Kene Orakwue, MPH, doctoral student at the University of Minnesota Twin Cities for their presentation titled, “Racism as a foundational contributor to inequities across multiple chronic diseases”. For more details and registration, please visit this page.

Forge AHEAD Center Announces Third Cohort of Scholars

The Forge AHEAD Center (FAC) is pleased to announce the latest recipients of its pilot funding for the third cohort. Four early-stage investigators were selected for their innovative research aimed at improving outcomes for cardiometabolic diseases across Alabama, Mississippi, and Louisiana. This new cohort investigate pressing health challenges like obesity, diabetes, and hypertension in communities that are often underrepresented in research. Pilot and feasibility funding is a cornerstone of FAC’s mission to push forward health equity by providing research that makes a real difference in people’s lives.

We celebrate the Cohort 3 Scholars for their commitment to important health issues. Their projects are critical to the Forge AHEAD Center’s mission to reduce health disparities and promote healthier communities through research.

We’re honored to recognize the following awardees:

Jennifer Caldwell, Ph.D., MPH, assistant professor at Pennington Biomedical Research Center – Project: “Linking GAINS: Linking Genetics and Improving Nutrition in Scotlandville”
Kaylee B. Crockett, Ph.D., assistant professor at University of Alabama at Birmingham – Project: “Adaptation and Initial Feasibility of a Primary Care-based Dyadic Cardiovascular Risk Reduction Intervention: ‘Heart Care Pairs'”
Lama Ghazi, M.D., Ph.D., assistant professor at University of Alabama at Birmingham – Project: “Post-Emergency Department Discharge Clinic Telehealth Program for Patients with Uncontrolled Hypertension”
Amber W. Kinsey, Ph.D., assistant professor at University of Alabama at Birmingham – Project: “An integrated cardiometabolic intervention targeting physical and financial health: A pilot study”

To support their research journey, scholars will receive both strategic guidance and mentorship, empowering them to conduct research that’s impactful in their respective domains. This funding underscores Forge AHEAD Center’s dedication to funding projects that have the potential to make a meaningful contribution to reducing health disparities, fostering sustainable, community-focused health initiatives.

We’re eager to see the positive impacts these scholars’ projects will have on advancing health equity and enhancing the well-being of individuals throughout the South.

For more insights into the scholars and their work, please visit the Forge AHEAD Center website.

The next cycle of funding is open for applications. We encourage early-stage investigators who qualify for pilot award funding to apply. Letters of Intent (LOI) are due June 25, 2024. You can find more details about the Pilot Award Program and RFA timeline here.

Our Scholars’ stories: Gazaway empowers high-risk CKD patients with ownership of medical journey

Shena Gazaway, Ph.D., assistant professor in the Department of Family, Community and Health Systems in the UAB School of Nursing, explores how to empower high-risk chronic kidney disease (CKD) patients and their caregivers in healthcare settings through her project “Impart multi.”

The project goal is to engage with high-risk patients and their caregivers who progress through kidney disease at a greater rate because of risk factors such as uncontrolled blood pressure and diabetes, says Gazaway.

Black/African Americans with chronic kidney disease and uncontrolled high blood pressure or diabetes face a higher risk of developing severe cardiovascular disease and their kidney disease getting worse more quickly than other racial demographics.

Many factors contribute to this risk, such as socioeconomic barriers. Gazaway’s study specifically focuses on the barrier of access to supportive, informative resources. Healthy outcomes require two-way quality communication between medical teams and the patient or caregiver.

Gazaway says all her work, which has historically focused on end-of-life decision-making, is guided by a group of community advisory members: two who are living with chronic kidney disease, two who are care partners of someone with chronic kidney disease, and one who has experience as a social worker in a dialysis clinic.

While their work has previously focused on end-of-life decision-making, Gazaway says the team expressed passionate interest in taking that concept upstream and finding ways to equip patients and caregivers earlier in the disease timeline. Because of Forge AHEAD Center’s funding mechanism, they can explore this new path with the same concept of decision-making.

Gazaway’s why

As a caregiver to her grandmother-in-law who later died from CKD, this work is deeply personal. “We grew up in a rural setting,” she says, where access was limited.

“Even though we are not in a rural setting in this study, patient activation and conversation are important. Patients and families need to be the drivers of conversation. Patients who are minoritized are often not the drivers of their clinical conversation,” Gazaway says.

“You are the owner of your medical journey. You are the owner of your healthcare experience. I don’t think our health care system does a good job of reminding people of that,” she states.

Her work seeks to change the way many Black/African American communities experience health and healthcare.

Encouraging ownership over medical journey

“Impart multi” consists of education sessions with patients on communication, social support usefulness, or a combination of both. The team wants to understand how educational sessions empowering patients and caregivers can impact decision-making and how patients or caregivers receive support from their medical team.

To teach this personal empowerment, the project focuses primarily on coaching patients and caregivers on how to ask questions. Correspondingly, patients and caregivers learn tactics of how to advocate for themselves in the medical and healthcare setting.

“I want people to know they have permission to ask questions. In some of our pilot work with end-of-life or serious illness, we see people forgetting—when they are in the medical space—that they have the permission to ask questions.”

Educational sessions are delivered to 32 Black/African American adults with stage 3 or 4 high-risk CKD by a lay coach navigator through telehealth or telephone, directly “in the community in people’s homes.”

“We are teaching coping activation, education, and decision-support skills designed to help patients enter an appointment empowered, to talk about what they need and to get the resources they need…We want to enhance communication and the ability to self-manage and enhance self-advocacy at the medical appointment.”

Building momentum

Gazaway says her team plans to share results scientifically and in the community.
She envisions giving patients a one-pager with must-ask questions that help them feel they deserve quality care and will empower them.

Ultimately, the foremost goal is to learn what components of this intervention have the most impact. After the study concludes, Gazaway says they hope to take the most active components to apply for more funding.

Empowering Communities: Dr. Tiffany Haynes’s Innovative Approach to Health Equity

The Forge AHEAD Center was honored to host Tiffany Haynes, Ph.D., at the University of Mississippi Medical Center this week as part of our scientific seminar series. Dr. Haynes, associate professor in health behavior and health education at the Fay W. Boozman College of Public Health at the University of Arkansas for Medical Sciences, engaged with FAC members in Jackson, sharing her experiences and insights, further enriching our understanding and commitment to health equity.

Dr. Haynes shared her enlightening presentation, “Fostering Health Equity for Black Men: Insights from the Barbershop Talk Project,” to a hybrid crowd Wednesday. The project, part of the Center for Research, Health, and Social Justice (CRHSJ), is a testament to the innovative approaches required to address health disparities among Black men, focusing on stress management and the reduction of unhealthy alcohol use. Situated in barbershops across Arkansas, this initiative leverages these community hubs to offer early detection and intervention for unhealthy drinking behaviors, tackling significant health risks like cardiovascular disease and cancer. Dr. Haynes emphasized the distinct challenges Black men encounter, stating, “This is important and necessary,” to highlight the vital need for support mechanisms beyond alcohol in addressing the unique stressors faced by this group.

Throughout her presentation, Dr. Haynes imparted lessons learned from implementing the Barbershop Talk project, emphasizing the importance of social justice and community engagement. She candidly shared, “This is not work for the faint of heart,” acknowledging the challenges of navigating a healthcare system not originally designed for such community-centric work. The success of the community-informed SBIRT (Screening, Brief Intervention, Referral to Treatment) model demonstrated the profound impact of tailored, culturally sensitive interventions on individuals and families. Echoing the broader influence of this initiative, a community advocate and supporter of the project shared in a video, “Since I’ve stopped drinking, I’ve had friends and family members looking at me. And older guys saying ‘Man, you still sober? I’m trying to get there.’ To have these older guys looking at me – that says a lot,” highlighting the ripple effect of positive health behaviors within the community.

In alignment with the Forge AHEAD Center’s mission to reduce health disparities and foster equity, particularly in the Deep South, the Barbershop Talk project serves as a shining example of the type of innovative, community-driven research and interventions we aim to support. Dr. Haynes’s approach of incorporating health education and interventions within community settings reflects Forge AHEAD’s commitment to empowering communities toward improved health management. “The model of going to where people are is one that we should use,” Dr. Haynes remarked, advocating for accessibility in health promotion efforts. By spotlighting transformative projects like Barbershop Talk, the Forge AHEAD Center continues to advance its mission, not only enhancing health outcomes but also empowering individuals and families toward a healthier, more equitable future.

View the recording of the presentation below.

Join us at our next seminar in April, where we will host Seth A. Berkowitz, M.D., MPH, associate professor in the Division of General Medicine and Clinical Epidemiology at the University of North Carolina at Chapel Hill School of Medicine. He will share about “Food Insecurity, Diabetes, and Distributive Institutions.” For more details and registration, please visit this page.

Our Scholars’ stories: Karlson empowers next generation of youth who have Sickle Cell Disease

Cynthia Karlson, Ph.D., vice chair of Pediatric Research at University of Mississippi Medical Center (UMMC), is leading a study to promote wellness through exercise and physical activity for adolescents with Sickle Cell Disease.

Sickle Cell Disease (SCD) is the most common genetic condition in the world, affecting over 100,000 individuals, predominately Black/African American individuals, in the United States. It is a chronic, disabling, and life-threatening condition.

“Sickle Cell FIT: Increasing Physical Activity in Youth with Sickle Cell Disease” aims to examine the feasibility and safety of strength-training exercise in youth with sickle cell disease, says Karlson. The study works to prevent future cardiometabolic disease correlated with obesity.

“We also aim to gather information from the sickle cell community regarding barriers to physical activity.” Those barriers may include social determinants of health, such as poverty and access to education and health care.

Combatting a concerning trend

Nearly 25% of children and adolescents with SCD are overweight or obese. The increasing rate of obesity in youth with SCD deepens concerns for future cardiovascular disease, pain, metabolic syndrome, and Type II Diabetes.

Karlson explains that the project works directly with adolescents and young adults with sickle cell disease to conduct an exercise trial and monthly wellness group.

The Sickle Cell FIT program includes two arms: Warrior FIT and Community Outreach.

The Warrior FIT 8-week intervention is based on research that suggests moderate-intensity aerobic exercise and low-strain muscle training are most effective for individuals with SCD. The study enrolls 40 patients 12-21 years old into the 8-week pilot feasibility and effectiveness intervention program. Warrior FIT teaches safe exercises that youth can do at home through a combination of in-person and telehealth visits.

Regarding the Community Outreach program, Sickle Cell FIT partners with the UMMC Pediatric Sickle Cell Program and is working to create educational materials on the risk of obesity and benefits of safe exercise.

Additionally, Karlson says, “We will work with community members that work with individuals with sickle cell disease. Community groups include parents of youth with sickle cell, the Mississippi Sickle Cell Foundation Board, the Mississippi State Department of Health, and UMMC Center for Integrative Health.”

Early insight, lifelong impact

When asked how this project impacts the community, she says, “We hope to demonstrate that strength-training is safe, effective, and beneficial for youth with sickle cell disease. We also hope to gain important knowledge regarding the barriers to physical activity within the sickle cell community in Mississippi.”

Karlson’s “why” surrounding her work is to promote better health through exercise and physical activity for this at-risk population. Serving a patient population that has been historically underserved by both the medical and research communities is central to this study.

Ultimately, the research aims to educate the health care system, policymakers, community, and patients regarding the risks related to overweight/obesity. Knowing and sharing the benefits of safe exercise in individuals with SCD can greatly contribute to reducing health disparities in this vulnerable population.