In this episode Corinna Cornejo and guest co-host Stephen Shaul (you may know his blog happy-medium.net or his Diabetes by the Numbers podcast) discuss how the words we use have an impact on the lives of people living with diabetes.
Emily Coles interviewed Jane K. Dickinson, a nurse and Certified Diabetes Educator, who has been living with type 1 diabetes for 40 years. In 1993 Jane gave her first talk on the importance of considering language when working with people who have diabetes, and she has been interested in the impact that words have on our diabetes experiences ever since. Jane oversees the (online) Master of Science in Diabetes Education and Management Program at Teachers College Columbia University (www.tc.edu/diabetes) and incorporates discussions on using patient-centered and strengths-based language into each of the courses she teaches. Jane also provides diabetes education to patients, families, and health care professionals in northwest Colorado.
In March 2015 Jane began researching the effect of words on diabetes. In this live interview Jane will share the results of the focus groups she conducted, including the virtual focus group that was held here on tudiabetes. Jane’s own experience with words and diabetes, as well as her research findings, have prepared her to work with diabetes professionals and patients alike. Jane’s goal is to help people adopt more empowering words when speaking or writing about diabetes and those who live with it.
This week Corinna and Mike talk about some of the research that Dr. Michael Haller is doing through TrialNet. Haller’s work has focused on genetics, environment, prevention and cure. They also discuss why “prevention” is sometimes seen as a dirty word and analyze Haller’s optimistic and hopeful yet also realistic look at the race toward a cure for type 1 diabetes.
Some links discussed in this episode:
Corinna and Mike talk this week about online peer support for people with diabetes including the emerging DOC article from Baylor University, Elena Sainz’s dissertation based on members of EsTuDiabetes.org and we play an interview we did with Michelle Litchman about her dissertation on the topic.
This week we also talk about a document that can help people get started online. Download it here: http://diabeteshandsfoundation.org/doccolor/
Kelly L. Close is the founder and Chair of the Board of The diaTribe Foundation, a nonprofit dedicated to improving the lives of people living with diabetes and prediabetes, and advocating for action. Since 2006, she has been the Editor-in-Chief of diaTribe, our free newsletter focused on making people with diabetes healthier and happier and advocating for action. She has also run Close Concerns since 2002, a healthcare information firm exclusively focused on diabetes and obesity. Kelly and her colleagues attend over 40 scientific, regulatory, and economic conferences globally focused on diabetes and obesity, read key medical literature in the field, and write regularly about 50-plus private and public companies and nonprofit organizations in the area. Kelly’s passion for diabetes comes from her extensive professional work as well as her personal experience as a patient with type 1 diabetes for over 25 years. Prior to starting Close Concerns, Kelly worked in the financial sector, writing about medical technology companies, and worked at McKinsey & Company, where a majority of her work focused in the healthcare practice. Kelly is widely viewed as an expert on diabetes and obesity markets and as a frequent speaker on the public health implications of diabetes and obesity, she is a tireless supporter of patients. A longtime diabetes advocate, Kelly is on the board of directors of the Diabetes Hands Foundation and the Behavioral Diabetes Institute and was previously on the Executive Board of the SF Bay Area JDRF. Kelly is a graduate of Amherst College and Harvard Business School. She lives in San Francisco with her children Coco, Lola, and Valentino and husband John, with whom she runs Close Concerns.
Adam Brown joined diaTribe in 2010 as a Summer Associate, became Managing Editor in 2011, and now serves as Senior Editor. Adam brings nearly 15 years of experience with type 1 diabetes to all of his work at diaTribe, especially in testing out new technology like glucose meters, CGMs, insulin pumps, automated insulin delivery, and mobile apps. Adam also writes an acclaimed column for diaTribe, Adams Corner, which focuses on actionable tips for living well with diabetes. Through his work at Close Concerns and diaTribe, Adam has brought a patient perspective to numerous venues, including FDA meetings, scientific and industry conferences, and patient events. Adam graduated summa cum laude from the Wharton School of the University of Pennsylvania in 2011 pursuing concentrations in marketing and health care management & policy. He is passionate about exercise, nutrition, psychology, and wellness, and spends his free time cycling in San Francisco.
Carla J. Greenbaum, M.D., is a Member of the Benaroya Research Institute, where she serves as the Director of the BRI Diabetes Program and the Clinical Research Center, and is on the Institutional Review Board. She received her undergraduate and medical degrees at Brown University and completed her endocrinology fellowship at the University of Washington. Dr. Greenbaum is a clinical investigator with a focus on the natural history of type 1 diabetes, specifically with prediction of disease and interventions to alter immune mediated beta cell function. She has conducted studies evaluating beta cell function and other physiologic and immune changes that occur during the progression of the natural history of type 1 diabetes.
In addition to clinical trials, she works to facilitate translational research initiatives locally and nationally. Her considerable expertise includes clinical trial design and implementation, and evaluation of biomarkers for disease course and response to therapy. She currently serves as Vice-Chair of Type 1 Diabetes TrialNet, an NIH sponsored international consortium to conduct multiple clinical trials in type 1 diabetes and will assume the position of Chair in 2015. In addition she heads up the HUB project, designed to work collaboratively with the Chairman’s office, clinical sites and the TNCC to identify and implement sustainable and scalable processes and improvements within the TrialNet consortium and is the PI for the Northwest Clinical Site. In this role, she is responsible for protocol development and clinical issues study wide. She is also involved with clinical trials with the NIH sponsored Immune Tolerance Network and the Diabetes Vaccine Development Center in Australia, as well as Phase I/II pharmaceutical trials.
She was appointed director of the Biobank Operations Center of the T1D Exchange, a national consortium sponsored by the Helmsley Trust. This registry and repository will facilitate the use of biological samples from T1D patients by qualified investigators in industry and academia.
Dr. Greenbaum is a member of the University of Washington’s CTSA leadership group. She serves on various national and international scientific review committees focusing on clinical and translational research. Currently, Dr. Greenbaum is on the Board of Directors of the Benaroya Research Institute.
Founded in 2013 by Dr. Claresa Levetan, Perle Bioscience is dedicated to finding original treatments for type 1 diabetes with the ultimate goal of eliminating the disease all together. Perle has discovered novel human beta regeneration peptides for which has been issued “composition of matter” patents. Perle’s total IP portfolio comprises 12 issued and pending patents all in the diabetes space. Perle’s intellectual property is established around the In Vivo use of proton pump inhibitors combined with immune tolerance agents, with the ultimate goal of eliminating any injections for the patients. To learn more, please visit us at www.PerleBioscience.com.
Dr. Fiorini received his Ph.D. in Immunology and Microbiology from the Medical University of South Carolina (MUSC) in Charleston in 2005. He later received his M.B.A. from the Citadel in 2007 and a Masters of Hospital Administration (M.H.A.) from the Medical University in 2008.
In 2010, Dr. Fiorini founded Immunologix, Inc. a company built on a specialized platform that transformed naïve human B-cells to produce 100% human monoclonal antibodies against multiple target antigens. From the company’s commencement in September 2009 through its acquisition by Intrexon Corporation (NYSE: XON) in October 2011, he served as the Founder and Chief Operating Officer. After the acquisition by Intrexon, he served as the Vice President of Antibody Development until transitioning into the role of Vice President of Therapeutics Business Development working directly under Intrexon CEO, Randal J. (R.J.) Kirk.
Dr. Fiorini left Intrexon in April 2013 to spend more time looking for “the next” start-up opportunity, building his biotech consulting company and spending time with his family. Dr. Fiorini joined Perle Bioscience as President and CEO in February 2014.
The Division of Diabetes, Endocrinology, and Metabolic Diseases (DEM) provides research funding and support for basic and clinical research in the areas of type 1 and type 2 diabetes and other metabolic disorders, including cystic fibrosis; endocrinology and endocrine disorders; obesity, neuroendocrinology, and energy balance; and development, metabolism, and basic biology of liver, fat, and endocrine tissues. DEM also provides funding for the training and career development of individuals committed to academic and clinical research careers in these areas.
As director of the Division of Diabetes, Endocrinology, and Metabolic Diseases, Dr. Judith Fradkin’s responsibilities include planning and implementation of a broad portfolio of basic and clinical research, including major clinical trials initiated or significantly co-sponsored by the NIDDK. She also manages several aspects of the trans-NIH coordination of diabetes research as chair of the Diabetes Mellitus Interagency Coordinating Committee (DMICC). Dr. Fradkin is responsible for coordinating the trans-HHS planning and implementation of a special appropriation for type 1 diabetes research, currently budgeted at $150M annually. Jointly with the U.S. Centers for Disease Control and Prevention,she is responsible for the development and implementation of activities of the National Diabetes Education Program (NDEP). She also represents the NIDDK in interactions with professional societies and voluntary groups and in a wide variety of forums and working groups, including those within the NIH, and provides patient care and teach at the Walter Reed Army Medical Center Bethesda endocrinology clinic.
Sernova is a clinical-stage company developing products for the treatment of chronic diseases using therapeutic cells transplanted into an implanted medical device to replace missing proteins or hormones.
Sernova’s device forms a natural environment promoting the long-term function of therapeutic cells. The company’s first therapeutic indication is for the treatment of insulin-dependent diabetes.
Dr. Philip Toleikis is a seasoned biotechnology executive, with over 20 years of experience in the therapeutic, medical device and combination product sectors. He has been President and CEO of Sernova Corp. a clinical stage company since 2009, successfully gaining financing for the company through grants and equity funding of over $10M, and has been leading the development of a natural and immune-protected environment for delivering therapeutic cells to patients with chronic diseases such as insulin-dependent diabetes and haemophilia.
Dr. Toleikis headed a successful consulting company for the medical device and combination product field and was previously Vice President, R&D Pharmacology and Drug Screening, at Angiotech Pharmaceuticals, Inc., where he built and oversaw product development teams working on novel combination products to improve technologies for restenosis, surgical adhesions, device related infections, and orthopedic indications as well as led the team in the development of a novel treatment for immune inflammatory disease with completed Phase II clinical studies in multiple sclerosis, psoriasis, and rheumatoid arthritis.
He also headed multiple corporate collaborations and in seeking in-licensing technologies. Dr. Toleikis is an author of multiple issued patents and over 110 patent applications. His research training and experience includes biochemical pharmacology, diabetes, oncology, inflammatory diseases (psoriasis, multiple sclerosis, surgical adhesions, Alzheimer’s disease and rheumatoid arthritis), osteoarthritis, neurological diseases and cardiovascular conditions including ischemic heart disease, cardiomyopathy, hypertension and aneurysms.
His career philosophy is in developing and empowering closely integrated product development teams and linking those to the physicians and patients who are in need of novel products to build a strong passion for success. He has been a volunteer for many years for regional science fairs, as well as Diabetes, and Heart and Stroke Foundations and on the grant writing committee for a local school council. Dr. Toleikis has earned advanced degrees from the University of Michigan and the University of British Columbia, where he completed his Ph.D.
Joshua Levy is a Bay Area native who works as a software engineer. His daughter was diagnosed with type 1 diabetes at the age of 18 months, and is now 13 years old. Joshua has been blogging for many years about potential cures for T1D, at Current Research into a Cure for Type 1 Diabetes. Check it out!
Grace and her mom, Nancy, will be joining us fresh from Grace’s summer camp for kids with diabetes, where she got to try out the Bionic Pancreas for ONE WEEK!
Grace has had T1D since 2011 and uses an insulin pump and continuous glucose monitor to manage her diabetes. Ever since she was diagnosed, she has continued to be very active in soccer, dance, and she has even completed two Triathlons and she plans to do more.
The Murphys met Dr. Ed Damiano at the 2014 Children with Diabetes – Friends for Life Conference in Orlando, FL after his wonderfully informative and inspiring presentation on the Bionic Pancreas. Nancy spoke with Dr. Damiano about Grace participating in his upcoming clinical trial for T1D children ages 6-11. Grace very bravely agreed to participate. The trial was scheduled to begin just two weeks later at the Clara Barton Camp in Massachusetts. Grace successfully completed the official screening process then Mama Murphy scrambled to make all the travel arrangements and get Grace enrolled at the camp. (It was a lot of work!)
On July 20th, Nancy dropped Grace off at Camp, where there were about 100 kids at camp, of which 12 girls were in the study. (A study with the boys will be coming up soon at Camp Joslin.)
Nancy also has type 1 diabetes, for almost 45 years, and can speak to the incredible advances in T1D care from the time of her diagnosis to Grace’s test-run of the BP!
Denise L. Faustman, MD, PhD, Director of Immunobiology, Massachusetts General Hospital & Associate Professor of Medicine, Harvard Medical School
Denise Faustman, MD, PhD, is Director of the Immunobiology Laboratory at the Massachusetts General Hospital (MGH) and an Associate Professor of Medicine at Harvard Medical School. She is currently leading a human clinical trial program to test the efficacy of the BCG vaccine as a treatment to reverse long-term type 1 diabetes. They are currently preparing to enroll patients in a Phase II study. Dr. Faustman’s research has been highlighted in publications including The Wall Street Journal, The New York Times, Los Angeles Times, and Scientific American. She earned her MD and PhD from Washington University School of Medicine in St. Louis, Missouri, and completed her internship, residency, and fellowships in internal medicine and endocrinology at the Massachusetts General Hospital.