When her 7-year-old daughter Mary was diagnosed with type 1 diabetes in 1998, event designer and lifestyle expert Sarah Lucas dove headfirst into a new world of raising diabetes awareness and fundraising for a cure, leveraging her wide network of friends and colleagues to make an impact in diabetes. In her time spent fundraising for JDRF, Lucas raised a whopping 9 million dollars for the organization through efforts like her and husband Don’s famous Bay Area Spring Fling.
But after 13 years as a powerhouse diabetes fundraiser and as her daughter Mary flourished into adulthood, Lucas felt as though something was missing. Throughout those years, she had urged the big organizations to consider shifting their focus to include fostering community. She yearned for a sense of connection for people with diabetes.
Across the country, celebrity chef Sam Talbot, diagnosed with type 1 at the age of 12, had been experiencing that same sense of ennui around his own work in diabetes, lamenting that many charity events – while meaningful work – had become formulaic, repetitive, “like groundhog day,” described Lucas.
Back in Silicon Valley and not far from Lucas’s home base, Juliet de Baubigny, a superstar venture capitalist who had sat on the board of Project (RED) with the likes of Bono, was navigating the type 1 diagnosis of her young son Nicolas. De Baubigny was shocked that, in today’s world, so few resources existed to help her navigate this new normal. Diabetes was suffering from a lack of public support and a lot of misconceptions…and so were those affected by it. She had been a part of helping to change the image of AIDS from a lifestyle disease fraught with stigma to a condition worthy of public empathy and action through her work with the (RED) campaign.
When these three people – a seasoned diabetes philanthropist with an eye for stunning visuals and bold campaigns, a charismatic celebrity chef, and a philanthropist and activist mom of a young child with diabetes – came together, magic was bound to happen. And they put that magic in front of Nick Jonas, the 23 year old rockstar diagnosed in childhood with type 1 diabetes with a huge fan base, undeniable popular appeal, and already a diabetes advocate in his own right. When they approached Jonas about the idea to start Beyond Type 1, he was instantly hooked on their look and tone.
“This doesn’t feel like anything I’ve seen before,” he told them. “We were really a fit with Nick,” explains Lucas.
Beyond Type 1’s visual branding is not just a fit with Nick; they’re a fit with Now.
When you hit their website or engage with them in social media, you feel as though you’re engaging with a lifestyle brand and not a pharma site. There is nothing clinical in their sexy simplicity or their diamond teardrop #thedropspotted swag. The white and rhinestone on black is bold, fresh, and the content they’re creating is rich.
In seven months’ time, Beyond Type 1 has burst onto the scene, amassing nearly 40,000 Facebook followers and a large presence on Instagram (at over 12,000 followers). They are building an engaged and passionate community on the various platforms where they live in social media.
Crediting their multi-perspective approach with the ability to develop diverse content, it’s critical to Beyond Type 1 that they remain “authentic” – which Lucas describes as “Nick’s big word.” Instagram, in particular, allows them a platform that is “cool and edgy, where people can say what they want.” It has been important to them that the voices on their Instagram page be real stories from real people “living beyond” their diagnosis with type 1 diabetes.
Both Lucas and Jonas dreamed of a new kind of community – one that leverages the power, reach, and talent of their expansive networks, one that offers everyone a visual voice, and one that gives back to the community in ways big and small – from their videos like Type1Day1 and their large grant awards to other nonprofits to the fact that their beautiful visuals are shared freely in social media and available in hard copy at no cost to the requester. A young friend of mine named Carson Wedding, age 12 going on 13, eagerly took Beyond Type 1 fliers to her North Texas middle school during Diabetes Awareness Month because they looked “professional and modern, not stuffy like lots of materials out there.”
Publishing new content everyday now, the organization did not expect to become a “content producer,” but because of the feedback they receive from people hungry for the sleek, beautiful images and empowering messages, they engaged a content specialist as part of their team. What is on the site now edges toward the lean side, but is of exceptional quality already, especially their videos (love this one!) and photos, which, with very few exceptions, feature people living with type 1 diabetes and not stock imagery.
Lucas doesn’t see Beyond Type 1 as a traditional diabetes nonprofit, but more like a seed-funded tech startup, as they have the luxury of having been completely self-funded. She says they are “taking the lessons from Silicon Valley and applying them to a nonprofit.” Lucas described how they have been incredibly fortunate to have launched in 2015 already understanding how to leverage the forces of social media and technology. Their campaign launched last November to raise 1 million dollars for diabetes charities is still bringing in donations and they were able to fully fund all seven of their grant awardees, with gifts from $5,000-$150,000 awarded to organizations that educate, advocate, or research for a cure – groups like Marjorie’s Fund, Tidepool, the Diabetes Research Institute Foundation, and the Nightscout Foundation.
I asked Lucas whether she anticipates there being a turning point at which time it becomes necessary to seek outside capital for the organization’s overhead needs and she said that, if that were to be the case, it wouldn’t be from the usual pharma sponsors. In keeping with their lifestyle brand approach, Beyond Type 1 will forever retain its non-clinical feel, she explained, and in that event would search for sponsorship from other sought-after lifestyle brands. “People don’t want to come onto our site and be reminded of pharma,” she said. Unlike other diabetes nonprofits, she knows she has leverage in heavy hitters like Jonas, Talbot, and other celebrities who have lent their voices to Beyond Type 1 like Victor Garber, Kendall Simmons, Sierra Sandison, and Nat Strand. “We’re not going to waste what we’ve been given,” promised Lucas.
Beyond Type 1 has big plans for growth and development in the coming years, with hints that they may even extend their diabetes focus “beyond” just type 1. Currently hiring to expand their team, they are seeking out the highest skillset of people who are interested and passionate in the kind of work that they are doing.
As the commanding voice of actor Victor Garber (also type 1) declares in one of their videos, Beyond Type 1 is a “new brand of philanthropy” that will “bridge the gap from diagnosis to cure, allowing people to live well today.”
We can’t wait to see what they do next.