In this episode of Voices of Inclusive Research, Dr. Ren speaks with Mary McGowan, President and CEO of the Foundation for Sarcoidosis Research, about the importance of awareness, policy change, and patient-centered solutions in advancing health equity.

Mary shares insights on sarcoidosis, a complex and often misunderstood inflammatory disease that disproportionately impacts communities of color, especially Black women.

As they dive deep into conversation, they explore the importance of initiatives like Champions for Change, which encourage organizations to provide paid time off for clinical trial participation, and emphasize the need for collaboration across community groups, researchers, and industry leaders.

This episode is a reminder that meaningful change happens when we listen to communities, take action on what we hear, and keep patients at the center of every decision.

Must-Hear Insights and Key Moments

• Raising Awareness: Understanding sarcoidosis and why awareness is critical, especially in underserved communities
• Beyond Trust: Recognizing that lack of awareness and not being asked are major barriers to clinical trial participation
• Policy in Action: How community feedback led to FMLA protections for clinical trial participants
• Breaking Barriers: Addressing real-life challenges like job security, finances, and access
• Power of Patient Voice: How listening to communities can drive nationwide change
• Collaboration Matters: Why partnerships between organizations, communities, and industry are essential
• Sustainable Change: The importance of ongoing education, advocacy, and awareness

About Mary

Mary McGowan is the President and CEO of the Foundation for Sarcoidosis Research, the leading international organization dedicated to improving the lives of those living with sarcoidosis. She leads efforts to improve clinical trial access, advance shared decision-making, and accelerate drug development.

Through initiatives like the Ignore No More Campaign, the Coalition to Advance Clinical Trial Engagement, and the FSR Global Sarcoidosis Clinic Alliance, Ms. McGowan is recognized for her strategic and collaborative leadership in advancing impactful, scalable solutions for rare disease patients.

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

Access to healthcare, awareness, and trust in medical research remain ongoing challenges for many underserved communities.

In this episode of Voices of Inclusive Research, Dr. Renarda speaks with Nicholas Jackson, founder of iHealth Network, about how culturally tailored media can bridge communication gaps and improve clinical research participation.

Nick shares how the loss of his mother and grandmother shaped his mission to advance health equity, emphasizing the importance of early detection, education, and access to resources.

The conversation also highlights a critical shift in perspective: the gap is not only about trust but also about awareness and access.

Together, they discuss how researchers and sponsors must engage communities with intention, show up consistently, and build relationships that go beyond short term projects.

Must-Hear Insights and Key Moments

• Personal Inspiration: How Nicholas Jackson’s personal loss fueled his mission to improve health outcomes and close life expectancy gaps
• Awareness vs Trust: Understanding that lack of awareness and access can be just as significant as trust in limiting clinical trial participation
• Tailored Media Matters: Why culturally relevant messaging and representation are essential for building connection and engagement
• Community Engagement: The importance of showing up consistently and building relationships before making an ask
• Rethinking Outreach: Moving beyond one size fits all strategies to intentional, community centered communication
• Sustainable Impact: Why ongoing presence, even beyond funded projects, is key to maintaining trust

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

Research isn’t just happening in labs. It’s happening in your everyday life.

In this solo episode of Voices of Inclusive Research, I break down how research quietly shapes the products we use, the health choices we make, and the options available to our communities every day.

From health and beauty to food, fitness, and mental health, research has evolved to better reflect real people and real needs, especially in Black and Brown communities that have historically been excluded from these conversations.

This episode is about recognizing research as a tool, understanding how it already supports us, and staying curious enough to ask better questions.

If you’ve ever felt intimidated by research or unsure how it applies to your life, this episode will shift the way you see it.

Must-Hear Insights and Key Moments

• Research Beyond the Lab: From skincare and haircare to fitness tools and nutrition guidance.
• Representation Is Progress: More inclusive research has led to better options for textured hair, melanin-rich skin, and diverse bodies.
• Knowledge Creates Choice: Research gives us language to ask better questions and make informed decisions about our health.
• Mental Health Matters: Open conversations, tools, and resources around mental health are the result of research meeting real-life needs.
• Curiosity Over Perfection: Staying curious leads to better questions, better choices, and healthier communities.

Follow Dr. Ren:

• Website
• Instagram
• LinkedIn

We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!