Sarah Lucas’ daughter Mary, now 23, was diagnosed with type 1 diabetes at age 7. Lucas quickly discovered the confusion surrounding the autoimmune disease that affects at least 1.25 million adults and children.

Lucas teamed up with singer and actor Nick Jonas (who was diagnosed with type 1 when he was 13), Juliet De Baubigny and Sam Talbot who also have personal connections to the disease to form Beyond Type 1. The non-profit organization’s vision is to bring a new level of respect, understanding and support to the global type 1 community.

A new dialogue

“We’re here to disrupt diabetes and change the conversation,” says Lucas. “There is a stigma and an added burden for those with type 1,” she says, ticking off cruel comments she’s heard involving everything from soda consumption to poor diet.  

Now it its second year, Beyond Type 1 connects the community in order to share experiences and tips. “There is such a tremendous focus on cure, which is of course very important to us, but we want to help you live well and thrive today,” says Lucas.

One of the most effective vehicles has been the use of social media. Beyond Type 1 has grown from a single initial Instagram post to a united global force. “The most common phrase of gratitude we hear is ‘I know now that I am not alone.’ That’s one of our biggest accomplishments,” Lucas says noting many say they didn’t know anyone else with type 1.

“The most common phrase of gratitude we hear is ‘I know now that I am not alone.’ That’s one of our biggest accomplishments.”

Reaching out

There are now six digital channels (and, reacting to user requests, content is now available in Spanish) including a website refreshed daily with pertinent information about everything from insulin to skydiving along with self-submitted stories that have helped more than 245,000 people.

“We love these stories because they are real life examples of those living with type 1,” Lucas adds. One of those personal narratives comes from 10-year old Elladia Jones, who was diagnosed with type 1 at age 8. As an actress, model, softball player, cheerleader and gymnast, she’s proof that diabetes doesn’t derail an active lifestyle. “I love Beyond Type 1. They are so supportive and I look at the Instagram every day,” says Jones.

The latest platform is a free app that has amassed more than 10,000 global users in 170 countries and inspired one-on-one dialogue across the world.

Raising awareness

The organization is now laser focused on education, especially since type 1 is challenging to diagnose. There is no cure and left untreated, type 1 can develop into a life-threatening stage called diabetic ketoacidosis or DKA.

Knowing the different between the flu and DKA can save lives, says Lucas. As many as 38 percent of cases are misdiagnosed. To that end, Beyond Type 1 has a three-pronged approach to teach about warning signs.

“A simple urine test or one drop of blood can determine type 1,” says Lucas, “We want to create a safety net under every child who goes to a pediatrician’s office.”  The toolbox provided to pediatricians includes posters, a taped on-hold message from Victor Garber (diagnosed at age 12), and newsletters available in print and online.

There are also plans to alert nurses to key signs such as frequent trips to the restroom and for health officials to encourage parents who keep kids out of school because of the flu to seek further testing.

The third piece is targeting parents, especially those with newborns recommending keeping an eye on extremely heavy diapers, which could suggest excessive urination.

“I didn't know anything about type 1 until one of my four children was diagnosed. We can’t prevent type 1, but we can halt DKA,” concludes Lucas.