On the heels of World Diabetes Day 2016, we'd like to recognize a dozen people who've made a big impact in U.S. diabetes care in recent years.
If you’re getting involved in the type 1 diabetes world at all, you'll undoubtedly run into the names of these dozen people, whose great work you’ll definitely want to know about.
These 12 individuals have all changed the game in some significant way for patients across the board (listed here alphabetically):
Christel Marchand Aprigliano (DPAC and D-Collective)
WHO: Christel is a longtime active T1D advocate based in Florida who focuses her efforts in two areas -- the psychological, peer-support aspect of diabetes, and lobbying for legislation that allows PWDs (people with diabetes) the best possible access to necessary tools and treatments.
WHAT: After starting the very first diabetes podcast, D-Feed, during the early days of social media in 2004, Christel worked as an advocate and diabetes blogger over the years before eventually founding the nonprofit Diabetes Collective in 2015, which hosts “UnConference” events for adults with T1D on both coasts. It’s a type of free-flowing “talk fest” where the attendees set the agenda as they explore all sorts of personal topics from love and intimacy with diabetes to guilt, burnout and mental health. Christel is also co-founder of DPAC (the Diabetes Patient Advocacy Coalition) that has taken on the critical work of helping the patient community lobby lawmakers at the federal and state levels.
WHY: With a wicked sense of humor and talent for saying it like it is, Christel has been a force to recon with representing the Diabetes Community at key policy events and meetings. Her work with co-founder Bennet Dunlap at DPAC has filled a critical void and is making important inroads in Diabetes Policy on insurance coverage, discrimination laws, and calls for tighter quality standards on diabetes devices, to name a few.
Jeffrey Brewer (Bigfoot Biomedical)
WHO: Jeffrey is an IT entrepreneur and philanthropist who became active in the D-Community after his son was diagnosed in 2002. He served as President & CEO of JDRF from to 2010 to 2014, and is now CEO of the promising California startup Bigfoot Biomedical developing a closed loop Artificial Pancreas system.
WHAT: As head of JDRF, Jeffrey is credited with steering the national advocacy organization toward investing resources in diabetes technology that helps people live well with diabetes now -- rather than focusing solely on cure research. As such, he led JDRF to invest in a variety of progressive tools that improve life with diabetes -- from better insulin pump infusion sets to improved CGM sensors that will make automated insulin delivery systems possible. Now, at the helm of Bigfoot, he’s overseeing the first clinical trials of this exciting system that “aims to provide all people with T1D and their loved ones a reliable, trustworthy, cost effective way to outsource most of the work, worry, and burden of managing T1D.”
WHY: In some ways, Jeffrey represents the face of today’s bold, empowered D-Community: patients and caregivers who are accomplished, confident, technology-savvy individuals -- ready and willing to devote their lives to improving diabetes care.
Kelly Close (Close Concerns and diaTribe)
WHO: Kelly is a San Francisco-based T1D advocate who heads the country’s most respected healthcare consultancy focused specifically on the diabetes industry.
WHAT: Kelly has a background in investment banking and market research on Wall Street, and founded Close Concerns in 2002 to share intelligence on diabetes, obesity, and digital health. The firm now employs a small army of whip-smart young associates, many from Kelly’s alma mater Wharton Business School. Collectively, they now write approximately five million words each year on important topics related to the business and governance of D-care. In 2012, Kelly established the nonprofit diaTribe Foundation to oversee their advocacy efforts, along with their excellent online patient newsletter diaTribe that was launched in 2006.
WHY: If you want to get anything done in the Diabetes Community -- including successfully launching a new product -- Kelly is the woman to know. She’s universally well-connected and valued, and her team is usually first to review anything new on the market. She’s also an incredibly sweet individual and mother of three, whose husband John works alongside her in all her diabetes endeavors.
Ed Damiano (Bionic Pancreas)
WHO: Ed is an associate professor ofbiomedical engineering at Boston University, who -- when his son was diagnosed with T1D at just 11 months old -- devoted himself to creating a new automated insulin delivery device that would come to market by the time his son set off to college.
WHAT: Ed lead the research team that’s created an early “closed loop” system called the iLet Bionic Pancreas, combining an insulin pump, continuous glucose monitor and control algorithms to automate insulin delivery based on blood sugar readings -- a breakthrough in diabetes care! To further develop and commercialize this system, he has co-founded a new public benefit corporation called Beta Bionics. Recently, Beta Bionics secured $5 million from the pharmaceutical company Eli Lilly, which manufactures the insulin used in the device.
WHY: Not only has Ed been instrumental in fostering development of a breakthrough Artificial Pancreas system, he’s also served as a high-profile advocate, garnering national media attention for T1D and the needs of patients. He was just recently honored as the 2016 WebMD Scientist Health Hero for his work on the Bionic Pancreas.
Steve Edelman (TCOYD)
WHO: Steve is professor of medicine in the Division of Endocrinology, Diabetes & Metabolism at the University of California at San Diego (UCSD) and the Veterans Affairs (VA) Healthcare System of San Diego and the director of the Diabetes Care Clinic, VA Medical Center. But he is possibly best-known as creator of the nonprofit educational org TCOYD (Taking Control of Your Diabetes).
WHAT: A longtime T1 himself, Steve has written more than 200 articles and five books about diabetes. He sits on numerous medical advisory boards and is involved in some of the most cutting-edge research. But he really changed the D-world when in 1995 he co-founded the amazing TCOYD national conference series that brings fun, engaging, affordable diabetes education to thousands of people living with T2 and T1 diabetes across the country.
WHY: With his unique ability to span the gap between the scientific realm of physicians and the basic needs of PWDs in real life, Steve has received numerous honors including “Outstanding Educator in Diabetes” from the American Diabetes Association in 2009. (Hat tip: attend one of his TCOYD conferences yourself to experience his exuberant approach.)
Jeff Hitchcock (Children With Diabetes)
WHO: Jeff is possibly the country’s best-known diabetes dad, who founded the incredible Children With Diabetes (CWD) community and has established himself as a nationally known advocate.
WHAT: Jeff kicked off Children With Diabetes (CWD) in June 1995 to help his young daughter Marissa meet other kids with diabetes and help support families struggling with the disease. CWD has grown to become one of the largest diabetes-related websites in the world, and the group hosts multiple in-person conferences serving thousands. Their flagship event is the annual CWD Friends for Life conference in Orlando, FL, which began in 2000 and is universally revered as one of the most informative and life-affirming meetings for T1D children, adults and families anywhere.
WHY: There is no arguing with the fact that Jeff’s work has changed the world for parents of children with diabetes in America and beyond. He also lends a strong voice of reason to national policy discussions and advocacy efforts on various diabetes issues.
Bill Polonsky (Behavioral Diabetes Institute)
WHO: Bill is Associate Clinical Professor of Psychiatry at the University of California, San Diego, and a CDE who founded the unique Diabetes Behavioral Institute (BDI).
WHAT: Bill authored the seminal book “Diabetes Burnout” back in 1999, that addresses the stress, distress, and depression so common among PWDs. The nonprofit BDI center he opened in San Diego in 2003 offers educational materials and courses for facing the psychological demands of diabetes -- including classes for caregivers and loved ones. He’s become a national champion for shining a spotlight on the psycho-social challenges of diabetes, speaking on these topics around the country and the world.
WHY: Bill practically pioneered this field, and is considered “the father” of addressing the unmet psychological needs of people with diabetes, if you will. The only complaint people have about his BDI center in San Diego is that its much-needed programs aren’t offered elsewhere.
Gary Scheiner (Diabetes Educator, Author)
WHO: A T1 of over 30 years himself, Gary is a celebrated diabetes author and CDE (certified diabetes educator).
WHAT: Gary runs Integrated Diabetes Services, just outside of Philadelphia, specializing in intensive insulin therapy and advanced education for children and adults. He has been a trendsetter in providing remote consultations throughout the world via phone and Internet. He’s written dozens of articles and six books, including the best-selling “Think Like A Pancreas-A Practical Guide to Managing Diabetes With Insulin.” In 2014, Gary was named Diabetes Educator of the Year by the American Association of Diabetes Educators (AADE). He lectures nationally and internationally and recently began a new gig heading up a coaching program for the popular MySugr app.
WHY: With a rare perspective as patient + provider + technology expert, Gary is an outspoken champion of advancements in diabetes technology and care. He stands as a role model for diabetes educators of the future.
Cherise Shockley (Diabetes Community Advocacy Foundation)
WHO: Cherise is an Indiana-based military wife and mother who immediately dove into the emerging diabetes social media scene after being diagnosed with LADA (Latent Autoimmune Diabetes in Adults) in 2004 at age 23.
WHAT: Cherise began blogging and soon launched the DSMA (Diabetes Social Media Advocacy) group to bring the community together for weekly Twitter chats, followed by the nonprofit parent org DCAF (Diabetes Community Advocacy Foundation). Her awareness-raising and peer support efforts include DSMA Live radio program; the ‘Rents live talk especially for parents; and the Blue Fridays initiative that encourages people to wear blue every Friday and especially on World Diabetes Day Nov. 14 to raise awareness for diabetes. She achieved a landmark for connecting the DOC (Diabetes Online Community) with the Healthcare Establishment when she negotiated broadcasting DSMA Live from the AADE annual meeting the last few years.
WHY: Cherise is a champion for grassroots activism and inclusivity in the diabetes community. She continues to find ingenious ways to employ social media in all its forms to inform, connect and represent PWDs.
Dana Lewis (#OpenAPS)
WHO: As a tech-savvy citizen hacker, Dana has accomplished the near-impossible -- crafting a homemade closed loop (Artificial Pancreas) and making DIY instructions available to the public so anyone can follow suit.
WHAT: Dana, along with her now-husband Scott Leibrand, recently invented the Do-It-Yourself #OpenAPS system, born out of her desire to hear her CGM alarms better at night. The project website states, “we believe we can engage the untapped potential of dozens or possibly hundreds of patient innovators and independent researchers and also make APS technology available to hundreds or thousands of people willing to participate as subjects in clinical trials.” For her day job, Dana is a digital research director at marketing communications firm W2O Group, helping derive insights from online interactions between doctors, patients, and the online health ecosystem. In her free time, she’s a prominent face of the #WeAreNotWaiting DIY diabetes technology movement, and she moderates the #hcsm Twitter chat on Sunday nights for anyone interested in the intersection between health care and social media.
WHY: Dana represents the entrepreneurial spirit that’s helped take the “ePatient Revolution” to new levels, and establish patient-innovators as a driving force to push industry, regulators, and policy makers. Thank you, Dana!
Howard Look (Tidepool)
WHO: D-dad Howard is President, CEO and Founder of Tidepool, the disruptive nonprofit developing an open platform for diabetes data.
WHAT: Howard is an accomplished IT executive who previously held leadership positions at TiVo, Pixar and Amazon. After his daughter was diagnosed with T1D in 2011, he was inspired to tackle the diabetes dilemma of data lock-in and lack of device interoperability head-on. He left his Silicon Valley tech career to found Tidepool, a not-for-profit startup focused on building a device-agnostic platform for all diabetes data. The strides Howard and Tidepool have made in working with industry and FDA regulators toward an open model for diabetes tech tools are unprecedented. In 2015, Howard was awarded the White House Champions of Change award for Precision Medicine on behalf of Tidepool’s work. And in 2016, he participated in a panel discussion with President Barack Obama at the Precision Medicine Initiative Summit at the White House.
WHY: Howard’s work with Tidepool is truly changing the paradigm for data-driven diabetes care; he’s helping to pave the way for innovative, interconnected tools that will have significant impact in healthcare even beyond diabetes. Huge thanks to you, Howard!
Hope Warshaw (AADE)
WHO: Hope is a well-known nutrition expert, author and CDE (certified diabetes educator) currently serving as 2016 President of the American Association of Diabetes Educators (AADE).
WHAT: Early on, Hope recognized the power of the patient community and the imperative that the Healthcare Establishment embrace patients. She has worked tirelessly to include patient advocates in national conferences and other prominent forums, and has been a strong voice advocating for an improved patient-provider partnership model. Hope even created a seminal handout to introduce healthcare providers to the DOC (Diabetes Online Community). As current president of AADE, she brings a disruptive approach that includes teaching CDEs how to best use technology and web tools to improve outcomes.
WHY: Aside from her prolific work on nutrition, Hope has arguably done more than any healthcare professional ever to provide the Patient Community a “seat at the table” in important forums. Her work has helped legitimize the patient voice, toward a more collaborative and positive treatment experience for both patients and providers going forward.
Our sincerest appreciation for all that these folks and their colleagues do toward improving life with diabetes!