With roughly 1.25 million people in the United States living with Type 1 diabetes, Juliet quickly realized there needed to be more resources to educate families, increase public awareness and work towards a cure for this disease. She co-founded Beyond Type 1 in 2015, teaming up with Nick Jonas, Sarah Lucas and Sam Talbot. Today, the organization uses 100% of every dollar raised to support global efforts and programs working to educate, advocate and cure Type 1 diabetes.

How did your son’s diagnosis with Type 1 diabetes inspire you to take action?

When my son, Nicolas, was diagnosed with Type 1, our whole family was shaken. We were thrown into a world we knew nothing about and began researching, learning, and piecing together what our “new normal” would look like. Sarah Lucas (who would quickly become my Co-Founder at Beyond Type 1) was one of the first to reach out and reassure me that there was a strong future. As a mom of a Type 1 herself, her guidance allowed me to see that my son could live a full and healthy life managing this disease, while also working towards an eventual cure. Together, we realized what a gap there was in resources for newly diagnosed families and set out to work to make a true impact.

What are the greatest obstacles when it comes to Type 1 diabetes?

Awareness. Public misunderstanding of Type 1 diabetes is so widespread due to lack of education and messaging about the differences between Type 1 diabetes and Type 2 diabetes. Beyond Type 1 works to educate the general public on the basics – Type 1 diabetes is an autoimmune disease that anyone can get at any age. The body’s own immune system attacks the cells in the pancreas that produce insulin. People with Type 1 diabetes must take insulin and measure their blood sugar levels to survive. The disease, if left unmanaged for even short periods, can kill you. There is no cure – at least not yet.

Cost. For so many people living with Type 1 diabetes in the USA and globally, the medication and tools they need to manage the disease are expensive. Devices like continuous glucose monitors and insulin pumps are impressive pieces of technology, but they’re not accessible by the vast majority of people living with Type 1 diabetes. Most importantly – the cost of insulin has risen to the point where it’s prohibitively expensive for many of the people who need it every day to stay alive. That’s not acceptable. And that doesn’t even begin to address the cost of research to actually fund the path to a cure!

How does Beyond Type 1 provide support?

Living with Type 1 diabetes can be incredibly isolating. It’s a 24/7 mental task to manage the disease, no matter what else you’re doing. Connecting the global T1D community online means no one ever needs to feel alone with this disease. At any hour of the day, people are on the Beyond Type 1 app or social media platforms asking questions, troubleshooting issues together, and comparing experiences.

How does the organization act as an advocate for those with Type 1 diabetes?

There are so many issues that impact people living with Type 1 – many of which are complicated, infuriatingly specific, and tiresome to parse out. For example, insurance coverage and healthcare in the United States. One patient who’s been denied a medical device by their insurance company can feel like a tiny voice up against a faceless system. Beyond Type 1 has the power to take this one person’s story and draw massive attention capable of making real change. In doing so, we’re also raising awareness about the issue of insurance denials overall and empowering the community to advocate for themselves.

We’ve had some tremendous success in this area; in 2017, Beyond Type 1 heard about Colton, a 2-year old with Autism who needed a specific insulin pump because of his conditions but was being denied coverage by his insurance company. After connecting with Colton’s family, Beyond Type 1 launched an online campaign and his denial was overturned. This is one case, but we used it to further leverage awareness about this exact type of problem, and provide context for how other families may be able to get what they need. Between fire-drill advocacy moments such as #CoverColton, or broader partnerships with other organizations, or strategic lobbying efforts aimed at policy, Beyond Type 1 is committed to advocate on behalf of T1Ds worldwide, and empower them to advocate for themselves.

What did you learn from your work with Bono on (RED) that helped you in starting Beyond Type 1?

Bono is my hero on so many levels and I have learned so much from him and the leaders of (RED) and ONE over the years – lessons on which I drew to start Beyond Type 1. Lessons such as the power of education to “brand” a disease so that people understand not only what it is, and how to live it with every day but how it can be cured; lessons about advocating for ALL affected and not just for those who have the means to afford it – as a global community we are truly stronger together and lastly for bold thinking – to find a cure in this case – but living life strongly and well on the path to find that cure.

What is your advice for those who are facing a new diagnosis, either for themselves or a loved one?

Visit BeyondType1.org, and learn more. Connect with the T1D community to hear from people who are living beyond their T1D diagnosis everyday. Use technology, which can help with day-to-day management and also with understanding the disease. And get involved.

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