In the first two installments of this series, Joanne Milo shared how innovation and community shaped her journey with Type 1 diabetes. After more than 60 years of living with the condition, she's still looking ahead. Today, she's working to address another unmet need: helping people with Type 1 diabetes age safely while ensuring researchers and healthcare providers better understand their unique experiences.
Read: The Savvy Diabetic Series, Part 1: Living with Type 1 Diabetes Since 1965
Read: The Savvy Diabetic Series, Part 2: How Community Can Change Life with T1D
A New Chapter for a Growing Community
After decades of educating and supporting people living with Type 1 diabetes, Joanne says she's busier than ever. While many of her friends are enjoying retirement, she spends much of her time working on a new initiative called T1D to 100, a volunteer-led community focused on helping people age safely and confidently with Type 1 diabetes.
For Joanne, the motivation is simple. Thanks to advances in diabetes care, more people with T1D are living long, healthy lives. Yet she believes the healthcare system and research community have not kept pace with this aging population.
"We're getting older and nobody knows what to do with us," she says. "It feels like no one's prepared for this. There's no one who knows how we're aging differently with T1D, and what we're supposed to do. We deserve to know. We survived this long."
T1D to 100 was created to help fill that gap by raising awareness of the unique challenges people face as they age with Type 1 diabetes, connecting community members with practical resources, and encouraging research that better reflects their needs.
The initiative also works to educate healthcare providers, foster resilience through community support, and ensure that people aging with T1D have access to the information they need to live safely, confidently, and with dignity.
Bringing the Patient Voice to Research
One of Joanne's biggest goals is making sure the experiences of older adults are heard by researchers and healthcare professionals."
The largest number of T1Ds are over 45 or 50," she says. "We're not kids."
She points out that while children often become the face of fundraising campaigns, adults now represent the majority of people living with Type 1 diabetes. This can feel especially alienating with a condition often referred to as “Juvenile Diabetes.”
"I kept saying: ‘we're the majority of people and where are we at the table?’"
That sense of urgency has led Joanne to work directly with researchers, advocating for studies that include older adults and address the realities of aging with T1D.
"For the most part, we've been excluded from research studies," she explains. "People over the age of 65 are viewed as liabilities. I know why we're excluded. It makes a lot of sense. We take a lot of medications, we are going to have comorbidities, but you still need to know what we need."
For Joanne, increasing representation isn't just about collecting better data. It's about improving lives: "I have a sense of urgency that the more we can make an impact, the more that we can influence research. Then we will be a little safer."
Educating the Medical Community
Joanne is also excited about another new initiative: creating educational content for healthcare professionals through VuMedi.
VuMedi is one of the world's largest online video education platforms for healthcare professionals, providing physicians and medical teams with access to expert-led clinical education and the latest medical research. Through a dedicated T1D to 100 channel, Joanne and her collaborators hope to bring the lived experiences of people aging with Type 1 diabetes directly to the healthcare providers who care for them, helping bridge the gap between clinical knowledge and the realities of everyday life with T1D.
"We're going to have a channel on there and help educate doctors, and that's our voice into the medical community."
By bringing together researchers, clinicians, and people living with Type 1 diabetes, she hopes to bridge the gap between lived experience and clinical care.
Looking Toward the Next Breakthrough
Joanne's passion for connecting with researchers is also what first led her to Diabetes Research Connection.
During the COVID-19 pandemic, while hosting Zoom sessions to help people learn Loop technology, she began looking for opportunities to connect with scientists developing the next generation of breakthroughs."
I really want to know who's got the cutting-edge stuff we can pay attention to early."
That curiosity has defined Joanne's entire journey. From embracing new technologies to building communities and now advocating for better research, she has always believed that knowledge, innovation, and collaboration have the power to improve lives.
Organizations like Diabetes Research Connection play an important role in that future by supporting early-career scientists with bold ideas and connecting the diabetes community to the research shaping tomorrow's treatments. As Joanne's story reminds us, every breakthrough begins with someone willing to ask what's next and work together to make it possible.
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Kaleigh Rhoads
Kaleigh brings a background in nonprofit leadership, science communication, and public engagement to her role at DRC. With a passion for making research accessible and meaningful, she supports the organization’s mission through strategic storytelling, social media campaigns, grant writing, and digital communications. Kaleigh recently completed her MSc in Science Communication and Public Engagement at the University of Edinburgh and is driven by a lifelong commitment to fostering compassionate, informed communities.
