Why Beyond Type 1 Matters: An Interview With Nick Jonas
The year before last might have been “complicated” for Nick Jonas, but since then, things have been going pretty well. Since his release of his third solo album, Last Year Was Complicated, Jonas won the Hal David Starlight Award in the Songwriters Hall of Fame for his songwriting, he went on tour with friend and singer Demi Lovato, he co-starred in Goat with James Franco, he released a song with songwriter Anne-Marie and producer Mike Posner, he wrote the song “Home” for the film Ferdinand, which was nominated for the Golden Globe Award for Best Original Song and — oh, and he won the Disney Hero Award (2017).
The award was given to him for his work co-founding Beyond Type 1, a Type 1 diabetes nonprofit, that aims to educate, and advocate around the disease as well as support the path to a cure. In just under three years, the organization has become the largest diabetes network on social media in the world, with nearly 2 million followers, making it a mega-influencer in the diabetes space.
Jonas explains why Beyond Type 1 is a whole new brand of philanthropy, saying, “I think traditionally the internet has been used as an educational tool for many diseases and things of that nature, but in regards to Type 1 diabetes (T1D), this is the first time social media has really been a defining factor in the outreach and the presence of a non-profit.”
He says that was intentional as well of the co-founders, which include CEO Sarah Lucas, venture capitalist Juliet DeBaubigny and chef Sam Talbot. The organization leverages social media to connect people across the globe who are affected by Type 1 diabetes via their 16 digital platforms and 18 native programs that include everything from a pen pal program and global app to running marathons and biking across the United States. They tackle big problems in the diabetes space, like issues of access and the lack of education around the disease by uniting efforts in the community, offering support resources and innovative solutions. They’re also the first to create an international DKA Awareness Campaign that’s rolled out in New Zealand, Mexico, Argentina and across half of the United States.
“To have made the impact we have and in such a short amount of time, is something I’m really proud of,” says Jonas.
Managing Type 1 diabetes is a full-time and demanding job, which can also be isolating, especially if you don’t know someone else who has it or is willing to talk about it. Jonas explains that when he was diagnosed with it in 2002 at age 13, he didn’t have a T1D community in which to turn.
“I felt pretty isolated initially,” says Jonas. “One of the reasons I was so drawn to being a part of Beyond Type 1 was really to find ways we could build up the community and be a support to those who maybe felt the way I felt when I was diagnosed, which was very alone.
“I felt I had never met anyone who had lived with Type 1, no one [had it] in my inner circle or anyone around me, so I think I looked to my doctors for a support system there to feel better about it and less overwhelmed. I imagine that someone who goes onto beyondtype1.org will find helpful information there and tools. Even from the Instagram Campaign, people can see that life can be lived and you can accomplish things you want to accomplish while living with this disease.”
Jonas is not new to inspiring other people living with Type 1. While on the road, he often meets kids with T1D and talks to them about what makes their life on a daily basis more or less complicated living with the disease.
“There is a camaraderie there, built in,” says Jonas, “because of the openness and a willingness to share about the journey you are on while trying to manage Type 1.”
When kids ask him how he does it, (manage T1D), with his demanding career and schedule that comes with it, he says he answers with honesty: “I let them know that I don’t have it all figured out and chasing perfection with Type 1 diabetes is impossible. There’s so much that’s out of your hands and finding a way to remain calm and patient in moments where diabetes interrupts your life is the key.”
There is a wisdom in Jonas’ advice that speaks to someone who has been there before and gets it. It’s positive and forgiving; it’s just plain smart.
When asked if he ever felt ashamed of having Type 1 diabetes, he says no, and explains, “There were times I felt misunderstood by people who hadn’t been educated about what the actual deal was with Type 1 diabetes. Instead of getting frustrated I try and find a way to pivot and think about how to educate people both on a global platform and on a smaller scale as well.
“I could be out to dinner with friends [and someone] asks that annoying question that most diabetics are asked, Can you not have sugar? Or, Did you drink too much soda when you were a kid? Which could easily be a night or day ruiner, but it’s rooted in someone not being aware, so it’s time to step up and educate and advocate.”
Educating others extends to his team as well, as it’s paramount in being able to do the job he does. “My life runs a million miles a minute,” he says, “so prioritizing things that are healthy for my diabetes and good for my career can be challenging at times. It would be a lot easier and more convenient in my life, creatively, artistically and just as far as being busy, if diabetes wasn’t a factor — if I didn’t need to think I worked out about two hours ago and that a crash is going to come in the next 15-20 minutes in the middle of an interview.
“So I need to be really conscious of these things and put a lot of trust and emphasis on the importance with my team of the management of the disease and be sure there’s always time for me to take care of whatever situation might come up.”
Jonas says that being transparent about having Type 1 has become second nature and that extends to family, friends and romantic partners.
“I think it is so important,” he says, “because there are times where you just can’t help that it interrupts and inconveniences your life, in a way that I think, if someone is a part of your world or is going to be a part of your world, then it’s good to be open about it.”
The actor, singer, songwriter and record producer believes in being utterly authentic, both personally and professionally. “I think with everything in my life and what I am focused on is being authentic, and that runs deep within me on a creative level and also when it comes to causes that I am drawn to.
“I don’t think it could be anymore authentic than it [Type 1] is something I actually live with on a daily basis. That includes the authentic nature of the relationship that’s built with our founders and our partners of Beyond Type 1. I think there is a lot of care there and everyone wants to see this thing continue to grow and it rings true to me and has me really inspired.”
When the international Bike Beyond team of 20 riders crossed the US last summer, Nick was there to greet them in California. (He even made a debut in the documentary about the ride.) His first reaction to hearing about Bike Beyond: “I wish I had more time in my schedule so I could join them. To be honest, I’m not sure I would have made it, but I would have had a good time trying.” He laughs.
He talks about the importance of celebrating the accomplishment with the team, especially because others said it shouldn’t or couldn’t be done. He asked them what kept them going and how they did it, inspired by the incredible feat, that for anyone would have been challenging, let along for someone managing a chronic illness like Type 1.
This notion of breaking boundaries is at the heart of Beyond Type 1. Nick, along with his founders and their team are changing the diabetes landscape, redefining what is possible, improving education around the disease and with that cure funding.
“I think the thing that is and has been the biggest factor for me is really rooted in love and care by the founders,” Jonas says. “Between the four of us, there is a long history with diabetes in our lives in a very real way. There is drive to do something good and bring something positive in the world and I think with the focus being on the community and trying to find ways to make the world just a little smaller, and specifically the world with diabetes, to help those who live with this disease or are affected by it, by making it a little less overwhelming and a little easier.”
It’s like the lyrics of his song “Home” in Ferdinad say: “Home is where you’re happy. Home is when you’re right where you should be. Find where you’re happy ’cause I’m happy to call this Home.”
Nick Jonas, what an inspiring home you have helped build too.