Bridging the Gap

Bonnie Schneider leads the IGA Nephropathy Foundation and has been on a long journey advocating for this condition for 21 years since her 13-year-old son was diagnosed. Bonnie shares how she transformed a mother's determination into a global movement that's helped bring the first specific treatments for IGA nephropathy to market after decades of relying only on steroids. We explore the challenges patients face, the breakthrough treatments now available, and why this is such an exciting time for the IGA nephropathy community.

Amy Dixon is a remarkable patient advocate in ophthalmology and USA Paralympian. Amy shares her powerful journey living with glaucoma and uveitis, having undergone 42 surgeries to save her remaining 2% vision. She discusses the critical importance of early diagnosis, treatment compliance, and establishing a partnership with your healthcare providers. Amy also reveals her passion for patient advocacy and her mission to ensure better support for those diagnosed with eye conditions. Join us for this fascinating conversation about living with vision loss while maintaining an extraordinary life.

Stephanie George is a patient advocate and peer mentor for the Sickle Cell Society. Stephanie shares her powerful personal journey living with sickle cell disorder, from childhood experiences to her work supporting young people with the condition. She discusses the unpredictable nature of sickle cell pain, treatment challenges, healthcare disparities, and the importance of awareness and community support. Join us for this illuminating conversation about a condition that impacts thousands of lives worldwide.

In this episode Scott McLean from the Haemophilia Society shares his personal journey living with severe haemophilia A, from childhood challenges to the transformative treatments available today. We explore the evolution of care, the psychological impact of the condition, and how modern therapies are allowing people with haemophilia to live fuller lives than ever before.

Gabrielle Davis is a patient advocate living with and championing awareness about lupus. Gabrielle shares her deeply personal journey—how she turned a life-altering diagnosis into a mission to educate, inspire, and build community for others living with chronic illness. We talk in detail about experiences navigating the healthcare system, balancing mental health, and finding hope in the toughest moments.

This episode brings you a personal, unfiltered look at what it means to face a chronic condition head-on. Andy Collinson, isn’t just a patient—he’s a passionate advocate who’s transformed his lifelong battle with atopic dermatitis into a powerful mission for change. He shares the highs and lows of navigating a healthcare system that often underestimates the severity of skin conditions, and he reveals how emerging treatments are bringing hope to those in the thick of it. So, whether you’re living with a chronic condition, supporting someone who is, or simply curious about the human side of health innovation, this episode is packed with insights.

In this episode we speak with Heather Russell-Kay, a dedicated advocate for individuals living with multiple sclerosis. Heather shares her deeply personal journey—from navigating the complex path to diagnosis to advocating for better understanding and support for MS patients. This conversation highlights why patient voices must guide how we approach treatment, care, and research into new drugs.

This episode features Kirstin Spencer, a patient advocate with MetUp UK and a patient expert for NICE and SMC. After her own challenging journey with breast cancer, Kirstin has dedicated her life to closing the gaps in care between primary and secondary diagnoses. From raising awareness about metastatic breast cancer to addressing systemic challenges in treatment, Kirstin brings a wealth of knowledge and an unyielding commitment to empowering others.

This episode features Katell Maguet, a researcher and patient advocate dedicated to improving outcomes for colorectal cancer patients. Katell shares her journey, highlighting the gaps in care for younger patients, the importance of raising awareness about early-onset colorectal cancer, and how patient collaboration can help shape better treatment options.

In this episode we explore the important and often misunderstood health challenge of obesity with Ken Clare, from Obesity UK and the Obesity Institute at Leeds Beckett University. Ken brings a unique perspective—not only as a former healthcare professional but also as someone who has personally navigated the complexities of weight management. We look at the realities of living with obesity, the stigma surrounding it, and the latest innovations in treatment, including the role of new anti-obesity medications. Plus, Ken shares his personal journey and why he believes compassionate, patient-centred care is crucial for change.

Dave Bjork is a patient advocate working in the lung cancer space. In this insightful conversation, Dave shares his personal journey, from his surprising diagnosis as a young non-smoker to becoming a voice for lung cancer patients. We explore challenges in diagnosis, disparities in care, the critical role of biomarker testing, and how patients can empower themselves in their treatment journey. Plus, Dave highlights the importance of collaboration across healthcare to address these gaps. More about Dave's work and his podcast can be found here: https://researchevangelist.com/

This episode features Alfred Samuels, a prostate cancer survivor turned patient advocate.  We discuss his 13-year journey since he was first diagnosed, where he brings to life not just the physical pain but the financial and emotional burden from living with cancer.  We then learn more about the pressing needs in the area of prostate cancer today, including improvements to education and better access to screening.

This episode features Sahara-Fleetwood Beresford, a passionate patient advocate and healthcare consultant specializing in inflammatory bowel disease. Diagnosed with ulcerative colitis in 2007, Sahara has faced surgeries, flares, and the challenges of navigating life with a chronic illness. Now, she’s using her experiences to support others, raise awareness, and drive patient-focused improvements in healthcare. Together, we look into the complexities of IBD and how patients can find empowerment and support.

This episode features Des Quinn, Chair of Fibromyalgia Action UK, where we discuss the realities and challenges of living with fibromyalgia. In this conversation, Des sheds light on what fibromyalgia truly is, the difficulties people face in getting a diagnosis, and the daily impact of this often invisible condition. We also explore the ongoing work to improve resources and support for those affected.

In this episode we explore the ongoing efforts to address hepatitis B and D with Beatrice Zovich from the Hepatitis B Foundation, a global organization focused on advocacy, research, and support for people affected by these viruses. In this conversation, we look at challenges in diagnosis, the stigma many patients face, and the Foundation’s work to increase awareness and improve policy. Whether you're a healthcare provider, a patient, or simply interested in public health, we hope you'll find this discussion insightful.

This episode features Robbie Currie and Angelina Namiba from the National AIDS Trust. They discuss the organization’s mission to fight HIV-related stigma, improve access to treatment, and uphold the rights of people living with HIV. Robbie and Angelina explore how far treatment has come, the barriers still faced by marginalized communities, and the importance of raising awareness to eliminate stigma. They also highlight the urgent need for education and support to ensure equitable access to care for all.  We hope you enjoy this fascinating conversation.

In this episode we explore the world of diabetes with Claire Levy from the Diabetes Research and Wellness Foundation (DRWF). Claire discusses the vital work DRWF does in supporting individuals with both Type 1 and Type 2 diabetes. From promoting self-management to raising awareness about the latest treatment options and technologies, their mission is to help people 'stay well until a cure is found.'   We hope you enjoy this episode and learn more about the challenges, innovations, and how DRWF is making a difference in the lives of those living with diabetes.

This episode features Georgia Sturt from Bowel Research UK. Georgia shares her organisation’s mission to fund early-stage research into a wide range of bowel conditions. She discusses the crucial role clinician-led studies play in improving patient outcomes, especially for those facing conditions that aren't often prioritized by commercial research. We also explore the challenges of early diagnosis and the vital need for innovation in screening methods. We hope you enjoy this fascinating conversation on how Bowel Research UK is driving change and how you can get involved.

This episode features Nick Palmer from Kidney Care UK where we explore the critical topic of chronic kidney disease. The discussion covers the challenges of early CKD diagnosis, the impact of new treatments like SGLT2 inhibitors, and the ongoing needs of CKD patients. We explore the importance of raising awareness, particularly in high-risk populations, and examine the gaps in current treatment options. Nick also shares valuable insights on Kidney Care UK's efforts to support patients and improve outcomes in chronic kidney disease management. https://kidneycareuk.org/ Let’s Talk Kidney’s Report: https://kcuk.cdn.ngo/media/documents/Kidney_Care_UK_-_CKD_Lets_talk_kidneys_report_-_Hyperlinks.pdf https://www.elmaresearch.com/