Helmsley Trust Funds New Boston-Based Website for Diabetes Patients
In New York, the name Leona Helmsley often evokes snarky jokes about Trouble, the pooch who inherited $12 million in 2007, when the hotel heiress known as the Queen of Mean died. So it might be a surprise to many New Yorkers to learn that Helmsley and her husband, Harry, set up a charitable trust in 1999—a fund that in the last 10 years has devoted more than $85 million to research into Type 1 diabetes. One of the newest projects to emerge from the Helmsleys’ largesse is T1D Exchange, a Boston-based clinical registry that’s designed to unite diabetes researchers and patients.
This fall, T1D Exchange will launch its most visible platform yet, a social media site for patients called Glu. The site will serve as a sort of Facebook for the diabetes community—a place where patients can go to interact with each other, as well as with the researchers who are trying to learn more about the disease so they can find better treatments. (See preview video below.) “The idea was conceptualized by the Helmsley Trust two years ago based on a gap a lot of people saw on the research side,” says Janak Joshi, executive director of T1D exchange. “The idea is to link patients with the research community, both academic and non-academic.”
T1D exchange is being funded by a three-year, $26 million grant from the New York-based Helmsley Charitable Trust. It launched in September 2010 as a patient registry, where participants could voluntarily self-report or upload data from their blood-glucose monitors. In June, T1D announced that 12,000 patients had enrolled in the registry, and that it had assembled its first set of data from the information those patients provided. The data showed that more frequent glucose testing correlated with lower HbA1c—a key measure of blood-glucose control.
T1D Exchange is also developing a biobanking service, which will collect samples from patient volunteers that researchers can use to study Type 1 diabetes.
True to its name, the social portal Glu is designed to bring all the stakeholders in the fight against diabetes together, Joshi says. The site will be completely voluntary—patients can reveal as much or as little as they like, he says. But the idea is to foster open conversation that’s unfettered by privacy concerns, Big Pharma gate-keeping, or anything else. “The philosophy is to clear the air, encourage conversation and access to unbiased information, and to accelerate research,” he says.
Glu will offer patients a variety of networking opportunities. They will be able to compare their data with that of their peers, suggest research projects for scientists to pursue, and make recommendations to other patients on everything from diet and exercise to the proper use of insulin pumps. Much like other social-networking sites, Glu will offer mobile capabilities and the ability to use geo-tags to drive location-based recommendations such as local restaurants with menu items suitable for people with diabetes.
Joshi believes the educational aspects of the site will be especially useful to Type 1 diabetes patients who live outside major metropolitan areas. “In Boston and New York, patients are savvy,” he says. “But someone living in Topeka doesn’t have access to the same resources.”
T1D Exchange is one of dozens of health programs supported by the Helmsley Charitable Trust. The fund donates money to diabetes summer camps and educational programs around the country. And it has a strategic partnership with the New York-based Juvenile Diabetes Research Foundation to support the development of new technologies, such as artificial pancreases and alternative insulin-delivery systems.
As for Trouble, the little white Maltese died in June at age 12. No word on how much of her $12 million fortune is left over, though a spokesperson for the family did tell the New York press that the remaining funds would revert to the Helmsley Charitable Trust. Alas, the dog that was Trouble in life will be leaving a little something for people dealing with the hassle of diabetes.