How Nick Jonas Plans to Live “Beyond Type 1”
By Alexander Wolf and Ilana Orloff
Twitter summary: New #type1 #diabetes non-profit @BeyondType1 aims to educate public about #T1D misconceptions + raise $1 million for cure research w/ help of @nickjonas
Update: Singer, songwriter, and a non-profit founder? Nick Jonas announced he is co-launching Beyond Type 1, a non-profit organization focused on raising awareness for type 1 diabetes and changing the public dialogue on the disease to focus on empowerment and strength. Nick was diagnosed with type 1 diabetes back in 2005, and he joins a fantastic team at Beyond Type 1 that includes Juliet de Baubigny, Sarah Lucas, and Chef Sam Talbot – all of whom have personal connections to type 1. As Nick explained in our previous interview, “The thing that drives me in a lot of ways is being able to help other people, talking about the real life challenges of this disease and ways to approach it to make it easier. I want to build a community that is open to talking about diabetes.”
Want an inside look at Nick Jonas' experience living with type 1 diabetes? See our past interview here! And to learn more about Beyond Type 1 and how you can get involved, see our full interview with co-founder and CEO Sarah Lucas below.
We recently spoke with Sarah Lucas, one of three co-founders of a new non-profit organization called Beyond Type 1 that aims to raise awareness for type 1 diabetes. Sarah comes from an impressive background spearheading numerous campaigns and events for JDRF, raising over $9 million for the organization. Through Beyond Type 1, she and her co-founders Juliet de Baubigny and Sam Talbot aspire to educate the public about what it means to live with type 1 diabetes, as well as provide philanthropic support to type 1 cure research with the ambitious goal to raise $1 million by the end of 2015. Beyond Type 1 is also leveraging the celebrity market, engaging high-profile people to spread awareness for type 1 diabetes (they’ve already seen success with celebs like magician David Blaine, artist Shepard Fairey, and NBA star Ray Allen, whose son Walker is pictured above). Indeed, Sarah mentioned they are approaching the media outreach for Beyond Type 1 like they would a fashion brand – with an emphasis on style and energy. Beyond Type 1 just launched their website this Tuesday – take a look at beyondtype1.org.
Beyond Type 1’s Instagram (@beyondtype1) showcases the experiences of people living with type 1 diabetes through an intentionally “edgy” visual aesthetic. Several members of the diaTribe team have submitted to their wall (see Ilana's photo below!), and we encourage anyone with type 1 diabetes to submit their own story at this link. There are so many individual definitions of what it means to live with type 1 diabetes, and we salute Beyond Type 1 for aiming to highlight a range of perspectives through this initiative. The founders have personal connections to the type 1 community, and it’s always welcome to see new thinking in diabetes coming from those with such obvious passion and motivation for their work.
To learn more about this new organization, its goals for its 2015, and how you can get involved today, read our interview with Sarah below!
diaTribe Interviews Beyond Type 1 Founder and CEO Sarah Lucas
ALEX: Please describe the mission of Beyond Type 1. What motivated you to start this organization?
SARAH: Our Mission: Beyond Type 1 aims to educate people about type 1, advocate for people living with type 1, and ensure a cure for type 1 is on the way.
Juliet, Sam, and I came together because of type 1. My daughter Mary (23) was diagnosed at seven, Juliet’s son Nicolas (8) was diagnosed three years ago and Sam (37) has been living with type 1 since the age of 12. We founded Beyond Type 1 because we are all personally touched by this disease and recognize there is a different narrative to be told: that of a strong, empowered community living with type 1. Through our Instagram wall we showcase the age, range and variance of those living their best life with T1D and our website and social media platforms provide education and support.
By raising awareness of this disease and educating the public we plan to fundraise to support the type 1 community and ultimately a cure. The public will not give unless they understand the need; if they think you caused this disease by eating too much sugar or that cinnamon would solve the problem, they are not likely to be generous. We have to change the understanding so people understand the need, because a cure is out there – it just takes money and time.
ALEX: What are the organization’s goals for its first year?
SARAH: For 2015 we are focused on building a presence within the global type 1 community and raising $1 million. Our operational expenses are 100% covered through funding from the founders and some generous friends, and 100% of every dollar raised will go to support programs in four areas: research for a cure, technologies and therapies, education and awareness, and community outreach.
ILANA: What sets you apart from other organizations?
SARAH: Two things that I think set us apart: (i) that we are 100% funded on the operational side so every dollar we raise will benefit the type 1 community; and (ii) we are creating a dynamic, collaborative open community, a place for people to land for inspiration and information, but also to share their voice (through submitting a feature) or story (through our Instagram).
ILANA: How do you hope to measure success with your organization?
SARAH: At a minimum, if the public could understand and absorb the difference between type 1 and type 2, that would be a home run for us. In terms of the long term success, we need to disrupt the global diabetes epidemic. Type 1 and type 2 diabetes affect close to 400 million people worldwide and the projected future numbers are unbelievable. We need to get people's attention, we need to make a lot of noise and we need for people to understand the urgency NOW. We are here to get the conversation going, to help galvanize the global population, and affect major change. As our Twitter hash tag conveys, we are here to #disruptlikeabadass.
ALEX: What do your outreach efforts look like? How are you ensuring that your Instagram wall encompasses a wide range of perspectives?
SARAH: Our outreach to date has been very organic and social media has a way of making that extremely easy. We started the wall with a few friends and family and it just took off. This disease affects a wide range of people and those perspectives and personalities have found us. People, it seems, have been waiting for this opportunity to share their authentic voice.
ILANA: What can people do to get involved? Do you have to have type 1 diabetes to help out?
SARAH: The website going live is a big moment for us and we are excited to welcome the world to Beyond Type 1. At a minimum, people can get involved by becoming a member, by following us on our social media platforms and joining the community on our website, and by sharing our resources. We hope people will continue to join the Instagram campaign, or for those who want to share more, become an ambassador and submit a feature for the website. #TheDropSpotted is a way for people to use their social media platforms to raise awareness: wear our Drop hat, share a fact and tag us (see the diaTribe team's #TheDropSpotted photo above).
We will be announcing events and collaborations throughout the next 18 months that will raise the bar - nothing typical or expected here - and lots of opportunities to support. The best way to be involved is to stay in the know - become a member! With the exception of being featured on the Instagram wall (it’s for people with type 1 diabetes only), you only need to care about solving this problem to join our efforts.
ALEX: What do you think is the biggest unmet need in diabetes today?
SARAH: The biggest need, other than a cure, seems to be a basic understanding of type 1 and type 2 diabetes, how and why people are affected, and why diabetes is a problem the world needs to work aggressively to solve. Diabetes is our generation’s cancer – the numbers and projections are so enormous – we will only be able to solve this tremendous burden by working together. We can't wait to get started.
[PHOTO SOURCE: BEYOND TYPE 1]