The Power of Community: How Type 1 Diabetes Advocacy Drives Research and Resilience
I spoke with Dr. Andrew Koutnik, an award-winning scientist specializing in type 1 diabetes and metabolic health, to explore his incredible dedication of the type 1 diabetes (T1D) community. Dr. Koutnik, who has lived with T1D himself, shared how the community’s advocacy efforts play a critical role in driving awareness, supporting families, and inspiring advancements in disease management and research.
Living with type 1 diabetes presents constant, daily challenges. Those managing T1D must balance blood sugar levels, calculate insulin doses, monitor diet, and adjust their lifestyle to avoid complications. This daily vigilance can take an emotional toll not only on individuals with T1D but also on their families. “Those people know what it's like every single day,” Dr. Koutnik emphasized. For parents managing their children’s diabetes, the responsibility can feel even more intense. As Dr. Koutnik shared, many parents feel a deep sense of duty and often wish they could take on the burden of the disease themselves to spare their children the struggle.
This level of dedication fuels a highly engaged and supportive community, one that is bonded by shared experiences and a commitment to helping each other navigate life with T1D. Koutnik recalls how, when a groundbreaking pediatric study on T1D was published in 2018, the response was overwhelming. A New York Times article covering the study became the paper’s most-emailed article of the year, reflecting the community’s eagerness for progress and advocacy for awareness. “The advocacy of this community is... so powerful,” Koutnik noted. This passion for knowledge and shared experiences is what drives so many families to advocate for improved research and resources for type 1 diabetes.
Managing type 1 diabetes in children presents unique challenges. Parents are responsible for not only monitoring their child’s blood glucose levels and administering insulin but also for balancing school, sports, and everyday activities—all while instilling a sense of normalcy. This can mean sleepless nights, frequent doctor visits, and a constant awareness of blood sugar highs and lows. Dr. Koutnik pointed out that many parents of children with T1D would gladly “die on the sword” if it meant sparing their child from the disease, illustrating the depth of love and dedication they bring to managing T1D.
For many parents, managing their child’s diabetes requires more than just medical care—it involves advocating for their child’s needs at school, in healthcare settings, and even within their community. This advocacy not only supports their child’s health but also educates others about the realities of T1D, helping to dispel misconceptions and foster understanding.
One of the most powerful ways the T1D community drives change is through advocacy for research. Community efforts have played a significant role in raising awareness about the need for improved treatment options, advancements in technology, and a search for a cure. Organizations like the JDRF (Juvenile Diabetes Research Foundation) and various grassroots efforts harness the passion of the T1D community to fundraise and support research initiatives.
Dr. Koutnik emphasizes the importance of advocacy-driven research, particularly as it relates to advancements in continuous glucose monitoring, insulin delivery systems, and other life-changing technologies. For people with T1D, these tools help make blood glucose management more manageable and accessible, improving quality of life and reducing the risk of complications.
Dr. Koutnik’s work also highlights the importance of evidence-based resources and support for the T1D community. His research and advocacy aim to make the latest scientific insights accessible and actionable, empowering individuals to take charge of their health. From lifestyle strategies to technology recommendations, having practical tools and reliable resources helps individuals and families better manage T1D while reducing the stress of daily management.
One key takeaway Dr. Koutnik emphasizes is that there is strength in community. The T1D community’s collective experience, passion, and advocacy make it one of the most resilient and united groups in healthcare. Through shared knowledge and mutual support, they not only help each other manage the demands of T1D but also push for a future with better treatments and, ultimately, a cure.
Dr. Andrew Koutnik’s insights into the type 1 diabetes community reveal a powerful network of advocates, parents, and individuals who face daily challenges with remarkable resilience. Their passion not only supports one another but also drives awareness, education, and research advancements in T1D. As science and advocacy converge, the future for those living with type 1 diabetes continues to look brighter, thanks to the dedication and support of this incredible community.
John Welbourn is Founder/CEO of Power Athlete Inc and former NFL player. John was drafted with the 97th pick in 1999 NFL Draft and went on to be a starter for the Philadelphia Eagles from 1999-2003, appearing in 3 NFC Championship games, and started for the Kansas City Chiefs from 2004-2007. In 2008, he played with the New England Patriots until an injury ended his season early with him retiring in 2009. Over the course of his NFL career, John started over 100 games regular season games with 10 play-off appearances. He was a four-year letterman while playing football at the University of California at Berkeley. He graduated from the college of letters and sciences with a bachelor's degree in Rhetoric in 1998. And did his Masters work at the UC Berkeley School of Education in 1999. Since retiring from the NFL, John has worked extensively with the NFL, NHL, MLB, Olympic athletes, the US Army and Naval Special Warfare. He works as a consultant and advisor for several companies focused on improving human performance through training, nutrition and fitness-based technologies. John provides daily coaching and mentorship to over 5000 athletes around the world through his Power Athlete Coaches Network and training program delivery platform. Since in 2013, John has hosted a weekly podcast, Power Athlete Radio; a podcast dedicated to improving performance and connecting with some of the smartest people on the planet. With more than 700 episodes Power Athlete Radio has proven to be on the top podcasts in the strength and conditioning realm. John travels the world lecturing on performance and nutrition for Power Athlete and as a keynote speaker. John is a married father of three and resides in Austin, Texas. You can catch up with him at his personal blog, “Talk To Me Johnnie”, at Power Athlete or on social media @johnwelbourn.