NEWSNOTES CHILDREN’S DIABETES FOUNDATION — WINTER 2019
THE CAROUSEL BALL PAGE 4
USING AN ARTIFICIAL PANCREAS TO CONTROL BLOOD GLUCOSE PAGE 16
NEWSNOTES FEATURES
Children’s Diabetes Foundation Board Members
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THE CAROUSEL BALL
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INSULIN PUMPS FOR BEGINNERS
EXECUTIVE BOARD:
SCIENTIFIC ADVISORY BOARD:
Mrs. Barbara Davis, Chairman Dana Davis, Executive Director
Richard S. Abrams, M.D. Director, Colorado Preventive Medicine, Rose Medical Center; Clinical Professor of Medicine UCD
Mr. Cameron van Orman, Vice Chairman Richard S. Abrams, M.D., Treasurer
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Mrs. Arlene Hirschfeld, Secretary
ASK/TRIALNET
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BDC STAFF SPOTLIGHT
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BDC WINS QUALITY IMPROVEMENT AWARD
Stephen Daniels, M.D., Ph.D. Chairman of Pediatrics The Children’s Hospital, Denver Mrs. Nancy Davis Rickel Steven Farber, Esq. Daniel Feiten, M.D. Mrs. Deidre Hunter Mr. Shawn Hunter
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ARTIFICIAL PANCREAS SYSTEM
Mr. Ken Rickel
Matthias Hebrok, Ph.D. Professor in Residence and Director, Diabetes Center, University of California, San Francisco
John J. Reilly, Jr., M.D. Vice Chancellor for Health Affairs & Dean, School of Medicine, University of Colorado Denver
Steven Kahn, MB, Ch.B. Professor of Medicine, Director of the Diabetes Research Center, University of Washington
Mrs. Stacy Mendelson Robinson
Rudolph Leibel, MD Professor of Pediatrics and Medicine, Co-Director, Naomi Berrie Diabetes Center, Columbia University
Mrs. Tracy van Orman
COMMUNITY CORNER
Ezio Bonifacio, Ph.D. Professor for Preclinical Approaches to Stem Cell Therapy, Center for Regenerative Therapies, Dresden, Germany Robert Eckel, MD Professor of Medicine, Physiology and Biophysics, University of Colorado School of Medicine
Mr. Shane Hendryson
Mr. Steve Lucas
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Mark Atkinson, Ph.D. Professor of Pathology & Pediatrics, Director, University of Florida Diabetes Institute
Marian Rewers, M.D., Ph.D. Ex-Officio Member
Alvin Powers, MD Professor of Medicine, Molecular Physiology/Biophysics, Division Director, Vanderbilt University William Tamborlane, MD Professor of Pediatrics, Yale University School of Medicine
NewsNotes is published quarterly by the Children’s Diabetes Foundation. If you would like to submit an article or a letter to NewsNotes, send information to Brent@ChildrensDiabetesFoundation.org.
Photo: © www.JensenSutta.com
Facebook.com/ ChildrensDiabetesFoundation
Zachary Reece, Graphic Designer Brent McDaniel & Dana Davis, Editors
@CDFdiabetes
@CDFdiabetes
CDFcares@ChildrensDiabetesFoundation.org 303-863-1200 • 4380 S. Syracuse St., Ste. 430 Denver, CO 80237
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Two doctors at the Barbara Davis Center have recently been honored with prizes from ISPAD, the International Society for Pediatric and Adolescent Diabetes. ISPAD is a professional organization that works to promote clinical science, research, education, and advocacy in type 1 diabetes and is the largest type 1-focused organization in the world. Dr. Georgeanna Klingensmith is a professor emerita of pediatrics at the BDC and was awarded the 2019 ISPAD Prize for Achievement, the society’s highest honor. It is awarded to any individual who has made outstanding contributions in the areas of science, education, and advocacy which have had a major impact on type 1 diabetes. Dr. Klingensmith was recognized for her overall body of work and contributions to the understanding of diabetes and improvements in diabetes care. Much of her research work increased our understanding of the epidemiology (who, when, where, and why) of type 1 diabetes, what sort of diabetes care children in the U.S. are receiving, and how their care impacts their health outcomes long term. Dr. Klingensmith’s research has included work in both type 1 and type 2 diabetes, but the main focus was in health outcomes in type 1 diabetes. Dr. Greg Forlenza is a pediatric endocrinologist and assistant professor at the BDC and was awarded the 2019 ISPAD Young Investigator Prize. Dr. Forlenza was selected for his overall work on diabetes technology. A study he conducted led to FDA approval for the predictive low glucose suspend algorithm developed by Dr. Peter Chase. Join us in congratulating these two outstanding doctors for their exemplary work with type 1 diabetes. We are proud for them to represent the Barbara Davis Center at the International Society for Pediatric and Adolescent Diabetes.
BARBARA DAVIS CENTER
ISPAD AWARDS
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33RD ANNUAL CAROUSEL BALL SUPPORTS PATIENT CARE AND RESEARCH AT THE BARBARA DAVIS CENTER On Saturday, October 19, 2019, the Children’s
Diabetes Foundation hosted the 33rd annual Carousel Ball at the Hyatt Regency Denver. The elegant event was hosted by celebrity emcee Mario Lopez and featured a show-stopping performance by the one and only Reba McEntire. Attendees bid on more than 300 items in the silent auction including a trip to Hawaii and a Darth Vader mask autographed by James Earl Jones. Proceeds from the gala benefit the Children’s Diabetes Foundation and the Barbara Davis Center for Diabetes. During the program, CDF proudly presented Dr. Richard Abrams with this year’s Founders Award in recognition of the instrumental role he has played in advancing diabetes care over the past four decades, with special respect to pregnant women with diabetes. Dr. Abrams was introduced to the stage by Dr. Marian Rewers, Executive Director of the Barbara Davis Center and Professor of Pediatrics. One of Dr. Abrams’ proudest accomplishments was his role in demonstrating that women with type 1 diabetes could become pregnant and safely deliver healthy babies thanks to contemporary diabetes care. He edited the first editions of the American Diabetes Association books Diabetes During Pregnancy and Gestational Diabetes. He has also written and edited five medical books and numerous articles. Dr. Abrams commented that a highlight of his professional life has been serving on the CDF Board of Directors and Scientific Advisory Board for more than 30 years. Following Dr. Abrams’ acceptance, Fundaneer Halie Behr took to the stage to kick off the evening’s live auction with packages including a vacation to Tuscany, tickets to the Ellen DeGeneres Show, and a golden pearl necklace from Trice Jewelers. Leading into the fundraising portion of the program, attendees saw the short film, “Olivia’s Journey” produced by Silver Halide Pictures. The video followed the story of two-year-old Olivia from Dallas who finally found hope and adequate treatment at the Barbara Davis Center following her diagnosis with type 1 diabetes.
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CDF also presented Lisa & Tom Corley with the High Hopes Tribute Award in honor of their 20 years of service and support of our Colorado community and the CDF. The Corleys were introduced by their longtime friend and CDF board member, Arlene Hirschfeld.
In her opening remarks, CDF Executive Director Dana Davis was delighted to honor two of Colorado’s most caring people. “I cannot think of a more giving and compassionate couple than the Corleys,” Dana said. “A true spirit of philanthropy radiates from within and is felt by all those around them.” At the end of the evening, guests were treated to an outstanding performance by the Queen of Country Music, Reba McEntire. She performed tracks from her new gospel album as well as fan-favorites from her illustrious music career, including “Fancy” and “The Night the Lights Went Out In Georgia.” Money raised from the Carousel Ball is an important part of the funding support the Children’s Diabetes Foundation provides to the Barbara Davis Center. The event also helps raise awareness of type 1 diabetes and brings attention to the chronic autoimmune disease that effects more than 1.25 million Americans. “We are so grateful for the outpouring of support from this amazing community,” said Dana Davis. “Together, we are supporting patients, raising awareness, and persevering towards a cure! I have to thank all of you from the bottom of my heart for being here, for making a difference, and for supporting the millions of people with type 1 diabetes around the world who need your help.” The 2019 Carousel Ball was made possible by our Lead Sponsor, Dexcom, our Gold Sponsors, Tina & Rick J. Caruso – The Grove and Iris & Michael Smith, and our Silver Sponsors, The Corley Legacy Foundation, The Crazy Merchant, Inc., Empower Retirement, RBC Wealth Management, Viacom & Paramount Pictures, 5280 Magazine, and the Hyatt Regency Denver.
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CAROUSEL BALL
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DURANGO OUTREACH 300 miles southwest of Denver, near the New Mexico border, sits Durango, CO. But for a newly diagnosed type 1 patient, the 7-hour
drive to the Barbara Davis Center might as well be to the far side of the moon. New-onset type 1 patients are already facing more than $20,000 in medical expenses in the first year, but add on the costs of fuel, time off work, plus lodging in Denver, and trips up to the BDC from Durango quickly become daunting. Thanks to the ingenuity and determination of some incredible staff members who knew there had to be a better way, the Durango Outreach program of the Barbara Davis Center was born. Here’s a quick peek at how it all got started. In the fall of 1978, Dr. Peter Chase from the BDC came down to Durango to meet with several patients and give a talk at Mercy Hospital about diabetes. At the time, there was no formal program for patients and families to learn about the disease. Anne Jensen, a pediatric nurse, took the opportunity to ask Dr. Chase many questions about diabetes, most memorably, which Clinitest was more accurate for measuring blood glucose levels: the 2-drop or 5-drop, referring to the urine tests used before the blood sugar meters of the 1980s and Continuous Glucose Monitors of today. From there, Anne and her colleagues started reaching out to type 1 families using the BDC’s Pink Panther books. As Anne was at the BDC for some additional training with Arletta Swain-Cockrell in 1990, the outreach program sprung into life with the help of BDC staff including Dr. Philip Walravens, Sherry Harris, RN, CDE, and Rita (Temple-Trujillo) Hughes, a social worker, as well as Dr. Steve Lavengood from Durango Family Medicine and Tamra Lavengood, a Clinical Nurse Specialist from Mercy Hospital. Dr. Walravens started making the journey down to Durango to meet with patients and families once per year. Dr. Lavengood, who knew Dr. Walravens from working at the ADA’s summer camp for kids, opened up space in his office for Dr. Walravens to begin the outreach clinic. As the program grew, visits became more frequent. Mercy Hospital’s CDEs (Certified Diabetes Educators), including Anne, Jane Hensen, RN, CDE, Marge Morris, RD, CDE, and Kim Ayres, RD, CDE helped the program grow and be recognized by the American Diabetes Association. Both Anne and Jane have donated time as medical staff at Colorado and New Mexico ADA summer camps for children with diabetes. Dr. Walravens retired in 2002 and Dr. Robert Slover took over the reins of the outreach program, visiting Durango twice per year. About three years ago, the program started holding monthly telemedicine visits in facility space donated by the Pediatric Partners of the Southwest. During these appointments, patients can video chat with Dr. Slover and the team to review their care options and ask questions. They receive all the same care and attention as a regular visit to the BDC, but without the added time and expense of a trip to Denver. This January, Anne Jensen is set to retire after 41 years as a pediatric nurse and CDE. Join us in thanking Anne for her amazing contributions to the Durango community and her hard work and dedication to the outreach program that has helped so many individuals. Working in the medical field in her small community, she has seen patients who were diagnosed as children, grew up to live happy and healthy lives, and are now having children of their own. Thank you, Anne, and congratulations on your retirement! We know the Durango Outreach program will continue on in your footsteps. PHOTOS (top to bottom)
Former Durango patients with one of their favorite diabetes educators, the Pink Panther! Left to right: Dr. Walravens, Anne Jensen, RN, CDE, Grace Calvet, Jane Henson, RN, BSN, CDE, Brianna, Travis. Front: Rita Hughes (Temple-Trujillo) Left to right: Anne Jensen, Dr. Philip Walravens, Sherry Harris, RN, and Tamra Lavengood, RN were all instrumental in setting up the Durango outreach program. A young patient colored this in appreciation of Anne’s work.
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Left to right: Kim Ayres, RD, CDE, Ann Christian-Dold, RN, CDE, Tamra Lavengood, RN, Marge Morris, RD, CDE, Jane Henson, RN, Anne Jensen, Dr. Robert Slover & Pediatric Partners of the Southwest staff.
Ashlee Ernst, a pediatric diabetes educator at the Barbara
Davis Center, was recently interviewed by Shahd Husein from T1D Exchange about insulin pumps and blood sugar management. Below is an excerpt from their conversation. What is an insulin pump? An insulin pump is typically a small box, around 2-2.5 inches by 3-4.5 inches, that pumps insulin under the skin, and can replace the need to give insulin injections with pens or syringes. Insulin pumps are loaded with rapid-acting insulin, and slowly deliver a continuous infusion, or basal rate to replace basal insulin injections. They also deliver boluses, which are larger, rapid doses, for meals and blood sugar corrections. People with diabetes program basal rates, correction settings, and meal dose settings to vary by time of day, which can make it easier to tailor insulin needs to the body’s diurnal rhythm and make dose calculations quickly. The pump uses these settings to calculate insulin doses, which the user can deliver or modify. What are the different parts of an insulin pump and what are they responsible for? The interface is a touch screen or button pad with a display that allows you to input settings, bolus insulin and, if connected to a continuous glucose monitor (CGM), see the current blood sugar reading. The reservoir holds a two-day to three-day supply of insulin. Most pumps connect to the body with an infusion set, which is the tubing and a hub that sticks to the body and holds a cannula under the skin. Infusion sets need to be changed every 2 to 3 days. In the case of the Omnipod pump, there is a separate tubeless piece (called a POD) that sits on the skin and is controlled wirelessly from a separate device with an interface. What are the pros and cons of using an insulin pump? Some advantages of insulin pump therapy include: • The ability to give smaller doses of insulin, between 0.1 to 0.025 unit increments, than injections; this is helpful for younger individuals. • The ability to give insulin doses with fewer injections. • The administration of insulin is easier and faster than with a pen or syringe and vial. • The adjustment of basal rates throughout the day, due to the replacement of long-acting insulin with smaller, hourly doses of rapid-acting insulin. Some disadvantages of insulin pump therapy include: • The feeling of having another device connected to the body. • The rare cases when an insulin pump breaks. Thus, it is important to know how to transition back to injections if an insulin pump needs to be replaced.
What features or options should someone consider if they are interested in using an insulin pump? Younger patients need to consider minimum basal insulin amount and dosing increments. Those who need larger amounts of insulin should consider whether the reservoir can hold enough insulin for three days. Other important decision points are whether to have CGM integration and whether to have the pump connected with a small hub and tubing or to have it connected directly to the body.
DIABETES NEWS
INSULIN PUMPS FOR BEGINNERS
Another possible feature for some pumps is the suspension of basal insulin if a CGM is predicting low blood sugar or detects a low. There also are features where the insulin pump will increase the basal rate if the blood glucose levels are running above the target blood glucose. None of these features replace treating low blood glucose levels or bolusing for meals. And while choosing a pump is a decision that should really be between you and your healthcare team, your insurer may limit your options. All three current manufacturers and several other companies who are planning to enter the market are working hard to “close the loop,” by connecting a CGM with an insulin pump and a controller device to automatically calculate and deliver insulin without input from the user. Some of these features are currently available, with options expected to expand in the next one to two years. What might someone with insurance expect to pay for an insulin pump? And what if that person had to pay out of pocket? The coverage of an insulin pump through an insurance company differs greatly between plans. The out-of-pocket cost for an insulin pump alone can be around $7,000. What do I do if my insulin pump breaks or stops working? Call your health care team right away if a pump stops working. Manufacturers are very quick to replace an inwarranty pump that is malfunctioning, but it is important to have an in-warranty pump so you can get a replacement if it breaks. In the event of a malfunction, you will need to transition quickly to injections with the guidance of your care team.
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BARBARA DAVIS CENTER
DAISY AND TEDDY DAISY and TEDDY are not just cute acronyms you may have seen on posters around the Barbara Davis Center, they are two far-reaching studies aimed at unlocking the root causes of type 1 diabetes, and their work has been incredible.
Known as DAISY, the Diabetes Auto Immunity Study in the Young was started in 1993 and has been continuously supported through 2020 by the National Institutes of Health (NIH). The goal is to learn how genetic makeup and environmental factors might interact to cause type 1 diabetes. As you can imagine, that process is not exactly simple. First, 30,000 newborns in Denver, Colorado were screened to determine their genetic risk for diabetes. Researchers looked for specific allele combinations in the HLA region of chromosome 6 which have been shown to indicate an increased risk of type 1. From there, the study follows 2,542 of the high-risk children to gather more information about their potential to develop type 1. Infections, diets, genes, and immunological markers are compared between the children who have developed diabetes and those who have remained healthy. The study’s investigators, led by Dr. Marian Rewers of the BDC, are able to take that comparison and map out the factors in a child’s life that might have led to the development of type 1 diabetes. This information is incredibly valuable as researchers look to find what causes type 1, and to help rule out what does not. For example, DAISY has demonstrated that certain viral infections increase the risk for type 1, while baby milk formulas based on cow’s milk do not increase the risk. As we learn more about what might and might not cause type 1 diabetes, we move one step closer to one day finding a cure or better treatment for those living with type 1. Based on the groundwork laid by DAISY, TEDDY was created by the NIH as an international consortium to expand the investigation. TEDDY, The Environmental Determinants of Diabetes in the Young, was funded in 2002 and has screened more than 424,000 children in Europe and America. From that group, the study follows 8,766 of the highest-risk children. Investigators in Colorado (headed by Dr. Rewers), Washington, Florida, Georgia, Sweden, Finland, and Germany collect the same information across the study to find out what factors can be changed to prevent or reduce the risk for developing type 1 diabetes.
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Both DAISY and TEDDY are no longer accepting new applicants, but many of the patients enrolled in the studies between 1994-2010 are still active with the program with regular visits to the BDC and monitoring for islet antibodies. If you have been involved in DAISY, TEDDY, or any of the other numerous studies out of the BDC, thank you so much for your participation!
Did you know there are two
programs at the Barbara Davis Center (BDC) for T1D screening? TrialNet, which screens children with a family history of T1D and offers interventions to eligible families to help prevent and delay onset of T1D and ASK, the Autoimmunity Screening for Kids program, which screens all Colorado children regardless of family history, ages 1-17, for T1D and Celiac Disease. The BDC is currently looking for T1D Ambassadors to help us promote these free screening programs. The BDC is hosting a T1D Ambassador training session on February 14th at the BDC from 11:30am-1:00pm where you will learn more about these free screening programs, and how you can help spread the word about the importance of screening to catch T1D and Celiac Disease early. During the training, you’ll also be given supplies for promotion and educational materials that you can share with family and friends to help raise awareness about these two most common autoimmune diseases in children.
BARBARA DAVIS CENTER
ASK/TRIALNET
RSVP is required to participate, as space is limited. If you are interested in becoming a T1D Ambassador at the BDC, please email Cristy (Program Manager for ASK) at: cristy. geno@cuanschutz.edu or Hali (Program Manager for TrialNet) at: hali.broncucia@cuanschutz. edu by 1/30 with any questions and/or to sign up. Lunch will be provided at the training. Thank you for your interest and passion for helping raise awareness around T1D!
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DIABETES WILL NOT WIN BY BRITTANY V., GAVIN’S MOTHER
Thursday, November 12, 2015, is a day I will never forget. It
was a particularly cold day here in Colorado. It snowed the day before so there were still patches on snow on the ground. My son, Gavin, who had just turned 4 years old on October 20, was experiencing some questionable symptoms. For about a week, Gavin was experiencing extreme thirst, excessive urination, and he was wetting the bed, all of which he had never done before. He would grab a standard 16 oz water bottle and chug it, and within minutes he was running to the bathroom. In a typical day he was going to the bathroom anywhere between 15-20 times. I remember being so frustrated with him and wondering if this was one of those weird phases that kids experience. I was washing his sheets every single night. My husband and I decided to take Gavin to the pediatrician just to rule out a potential bladder infection or UTI. My husband had taken our son in while I went to work and that’s when I got the scariest text message of my life. He said, “You need to come home right now.” I began to shake, my heart began to race, tears welled in my eyes, I knew something was wrong. I immediately called my husband and he was reluctant to tell me anything over the phone, but I can be very persuasive. He finally told me that they are pretty sure Gavin has type 1 diabetes and we need to go to Children’s Hospital. I could not think straight. I began to sob and then I thought, they are wrong. This just cannot be right. Type 1 diabetes? No one in our family has type 1 diabetes. Type 1 diabetes is an autoimmune disease where the body attacks the cells that produce insulin. As a result, the body will no longer be able to produce insulin. The cause of type 1 diabetes is a combination of genetics and unknown environmental factors. There is no cure for type 1 diabetes. I tried to convince myself that they were wrong, and he was fine. I had no idea how quickly our lives were about to change.
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When we arrived at the hospital everything began happening so fast. We were all so confused. When they checked Gavin’s blood sugar it was just over 600 mg/dL. A normal blood sugar for someone with a working pancreas is between 70-80 mg/ dL before meals and less than 140 mg/dL after meals. A blood sugar level of 600 mg/dL can lead to a condition called diabetic ketoacidosis, if left untreated, this can lead to life-threatening dehydration, organ failure, and death. I never knew how serious this disease was until Gavin was diagnosed. Gavin was not in diabetic ketoacidosis when we brought him into Children’s Hospital. The nurses and doctors continued to come into the room and poke Gavin. He was so confused. We kept telling him that he was sick, but he felt fine, so he did not understand why we had to stay in this room and why he continued to get poked. Gavin had an IV inserted into his arm so they could pump fluids into his body. He received insulin shots in his stomach. He screamed and cried as I held him down, while the nurses administered this life saving medication. I wanted this all to go away. I wanted to go back to the day before where my son was running around and smiling.
The next several months were some of the most difficult and dark times I have ever experienced. Gavin was receiving 8-10 shots a day. Every single time he ate something with carbohydrates, he needed insulin. Some days I was administering shots within 10 minutes, one after the other. Gavin would hide from us when it was time to give him a shot. We had to hold him down. He would call us mean and he would even try to bite, hit, and kick us. How do you explain to a 4-year-old that you are not hurting him, but keeping him alive? Gavin still did not understand why he continued to need insulin shots. I cried, a lot. Gavin would ask us why he had diabetes and why we couldn’t just take it away from him. I remember waking up and thinking, wow I just had a terrible nightmare, only to realize that the nightmare was true, and I was living it. That was when I made a choice, diabetes would not win. There will be hard days and there will be great days. I decided that diabetes would not control our life, even when it decides to rear its ugly head.
“Strength doesn’t come from what you can do. It comes from overcoming the things you once thought you couldn’t.” -Rikki Rogers Gavin has lived with type 1 diabetes for 1,460 days. We have lost countless hours of sleep. Gavin has received over 6,000 finger pokes, approximately 490 pump site changes, and roughly 300 continuous glucose monitor changes. When I look at Gavin, I don’t see a type 1 diabetic. I see a strong 7-year-old boy who is thriving. Gavin continues to live life to fullest by doing things he loves. Gavin loves riding his dirt bike, having nerf gun battles with dad, horseback riding, and making us all laugh with his joyful personality. I asked Gavin what it means to have type 1 diabetes and he said, “It’s stressful. It hurts. But I can still do everything. I am tough!” Gavin is the strongest boy I know. Gavin will continue to overcome and achieve anything he puts his mind to because he is stronger than diabetes.
The doctors, nurses, and support staff at the Barbara
Davis Center for Diabetes are amazing people, but with everything going on during your visit, you might not have had a chance to really get to know them personally. So, we sat down with Dr. G. Todd Alonso to learn a little bit more. Thank you for taking the time to speak with us, Dr. Alonso. How long have you been at the BDC? I joined the BDC right out of fellowship training in August 2013. CDF’s role is to raise funds to support patient care and research at the BDC. Have we made a difference for your patients or made an impact on your work? The CDF is a great resource for our center and our patients. In 2017, CDF made a large investment in the BDC’s electronic medical record system by hiring a fulltime programmer for two years. This has been a fantastic success, giving us the opportunity to make changes to how we use the system with more agility than other diabetes clinics around the country. The result is that we are moving to more proactive, streamlined care. One example of improvements we’ve implemented is the automatic generation and delivery of school health plans, which used to be slow and inefficient for families, cost us hundreds of staff hours each year to generate, print, and fax, and require frustrating and wasteful rework when faxes were mysteriously not received. This year we went a step further and automated a Sick Day Action Plan as well, complete with calculations of children’s insulin doses for use on days with high blood sugars and elevated ketones. Furthermore, our programmer has helped us change how we record and access data, which has allowed us to make a host of changes, including how we order insulin pumps and CGMs, how we identify care gaps and make it easy for providers and patients to address them, and how we reach out to families who need additional help getting scheduled for clinic attendance. Building on the CDF-funded pilot phase, we transitioned our programmer’s support to a grant from Colorado Medicaid to keep this important asset active. You grew up in Texas – anything you miss about the Lone Star State now that you live in Denver? My wife and I were born and raised in Texas, and we moved here in 2013 with our three young boys. With a new baby on the way in March, we’re excited to have our first true Colorado native! We do miss family and friends, Mexican food, and Texas bar-b-que, and we’re still getting accustomed to the concept of snow during baseball season. With frequent visits to and from family, though, we’re happy to live in a city with so many outdoor activities and much farther from hurricanes and mosquito swarms!
Do you have a favorite place to get outdoors around Denver? I love the week I get to spend at Camp Colorado in the Pike National Forest each year. It feels so wonderful to give such a great gift to the kids, to work with people who feel the same, and to do it in such a beautiful place. The last few years, I have taken to spending an extra day before camp riding my mountain bike up there and enjoying the quiet beauty of the National Forest. After growing up as a Boy Scout who attended camp in July in North Texas, where it gets down to a balmy 85 degrees at night, I finally appreciate how wonderful camping can be! What’s one thing someone visiting Colorado has to check out? Most of my Texas friends come to Colorado to ski or catch a concert at Red Rocks, but I think Denver summers are the best kept secret. With parks, pools, and trails in our neighborhood, I enjoy all the things I can do outside with my family.
BARBARA DAVIS CENTER
BDC STAFF SPOTLIGHT
What is your favorite comfort food? I really enjoy a nice chicken-fried steak, so big it drapes off the sides of the plate, drizzled with a white gravy and served with a large side of fried okra. File that under both “guilty pleasure” and “comfort food.” What has been one of your best experiences from your work at the BDC? Several years ago, we did a ski camp research study at Breckenridge testing out an artificial pancreas system with 16 of our patients. It was a great group of kids, many of whom I had known since their diagnosis with diabetes. Riding on Insulin ran a superb program, and we got to see some really cutting-edge diabetes technology tested to its limits. That, and I never imagined myself getting to ski and call it an honest day’s work.
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BARBARA DAVIS CENTER PEDIATRICS TEAM WINS NATIONAL QUALITY IMPROVEMENT AWARD BY DR. TODD ALONSO
In November, the Barbara Davis Center Quality Improvement
team was presented with an award for the Outstanding Pediatrics Team at the T1D Exchange Quality Improvement Collaborative’s annual meeting in Houston, Texas for their work in improving delivery of care to pediatric patients with type 1 diabetes. Formed in 2010 through a grant from the Helmsley Charitable Trust, T1D Exchange is a non-profit organization dedicated to advancing therapies and improving care for individuals with type 1 diabetes. In 2014, T1D Exchange embarked on a mission to improve the quality of healthcare delivery for individuals with type 1 diabetes through the establishment of T1D Exchange Quality Improvement Collaborative (T1DX-QI). A multicenter initiative, T1DX-QI aims to accelerate quality improvement (QI) through shared learning and continuous review of best practices and is the first learning collaborative in the U.S. dedicated to the care of people with type 1 diabetes. Quality improvement is the framework used to improve healthcare delivery, involving continuous, systematic efforts to reduce variation and improve outcomes. The Barbara Davis Center joined the Collaborative in 2016, spearheading efforts to develop a common data standard for clinical information. Although this may sound like a very dry topic, seamless, noncompetitive data sharing is crucial for diabetes clinics across the nation to understand variation and communicate with each other about interventions and improvements. This sharing of ideas allows diabetes specialists to identify best practices and adopt improvements quickly. The BDC’s strong data infrastructure is the key to allow us to co-lead this work. In addition to a robust clinical database led by Bing Wang, we are thankful for a generous two-year pilot grant (2017-2019) from the Tied to a Cure golf tournament that allowed us to hire a full time electronic medical record programmer, Anne Rottler. In an age where medicine has gone digital, the ability to track trends and drive workflows at the click of a button results in our clinics being able to stay up to date with the most current treatments and to maximize the value you get out of your relationship with our clinic.
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Some examples of the recent improvements that you may have encountered are care reminders for monitoring of diabetes related conditions such as high cholesterol, thyroid disease, and eye disease; the new appointment reminder system that automatically provides the parking code when you confirm the appointment; influenza vaccinations; and healthcare provider orders (school plans) and a sick day action plan with insulin dosing recommendations based on your child’s current weight and insulin doses, automatically delivered to the MyChart patient portal at every clinic visit. For those of you who use MyChart, I would remind you that it is a convenient tool for scheduling appointments, requesting refills, and messaging your healthcare team for nonurgent medical advice, all of which has been built out over the last several years. This spring, we also added a Patient Navigator, Katie Thivener, to the QI team. Katie uses data tools to identify pediatric patients who need a little extra help getting back into clinic and to facilitate the visit by identifying patient needs and coordinating their care. Delivering good healthcare has become increasingly complex, and at times, impersonal. Katie exemplifies our mission by using computing power to identify needs, allowing us to add that personal touch back into our work. As our team grows, every Pediatric Clinic employee has become a QI stakeholder, and continuous improvement is a part of our culture. I am tremendously thankful for Sarah Thomas, our QI Program Manager, who somehow keeps all this work organized and moving forward. As we look towards 2020 and beyond, we are planning to steal shamelessly some of the best ideas from leading diabetes centers around the country. Clinic visits will be more efficient, we will proactively identify patients at the highest risk for hospitalization, and we will tailor office visits to deliver higher value healthcare. Likewise, innovations at the Barbara Davis Center will be shared quickly and widely, with the goal of improving diabetes care across the nation. I am proud to work with such a fantastic team, pursuing the Center’s mission to deliver state-of-the-art care to children and adults with type 1 diabetes.
The Guild of the Children's Diabetes Foundation
“The Guild is dedicated to supporting families affected by type 1 diabetes through building a strong community, initiating programs for the underserved, and impacting those touched by the disease. I invite you to join us in continuing the legacy and work of our founding members, to lead us into the future and better serve those whose lives are forever changed by diabetes."
LISA CORLEY, 2020 GUILD PRESIDENT
2020 MEMBERSHIP OPEN NOW! PATRON: $75
STUDENT (25 & UNDER): $40
LIFETIME: $750 ONE-TIME DUES
CHILDRENSDIABETESFOUNDATION.ORG/THE-GUILD
2020-2021 CHARLOTTE TUCKER S C H O L A R S H I P
APPLICATIONS DUE
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APPLICATION TIPS FROM THE SELECTION COMMITTEE: DON'T: Start your essay with, "My name is ______." Wait until the last minute to ask for transcripts or recommendations.
DO: Read through the entire application first, start to finish. Thoroughly edit your essay and have someone else take a look too. Include quality recommendations from someone who knows you well. Include stand out accomplishments like Honor Roll, Eagle Scout, etc.
APPLICATIONS OPEN FEBRUARY 1, 2020
ChildrensDiabetesFoundation.org/charlotte-tucker-scholarship 15
DIABETES NEWS
ARTIFICIAL PANCREAS SYSTEM BETTER CONTROLS BLOOD GLUCOSE LEVELS THAN CURRENT TECHNOLOGY In October, the prestigious New England Journal of Medicine published an article showing clinical trial results for an
artificial pancreas study funded National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health, and led by investigators from the University of Virginia. The Barbara Davis Center was one of seven clinical sites that participated in the study and the paper was co-authored by BDC doctors Paul Wadwa and Gregory Forlenza. If you have questions about artificial pancreas systems, continues glucose monitors, or other diabetes treatment options, please contact your doctor to find out what is right for you. Excerpts from the NIH summary are below, and the full paper, “Six-Month Randomized, Multicenter Trial of Closed-Loop Control in Type 1 Diabetes” can be found at NEJM.org. A multicenter randomized clinical trial evaluating a new artificial pancreas system — which automatically monitors and regulates blood glucose levels — has found that the new system was more effective than existing treatments at controlling blood glucose levels in people with type 1 diabetes. The study showed that the system improved participants’ blood glucose control throughout the day and overnight. The latter is a common but serious challenge for children and adults with type 1 diabetes, since blood glucose can drop to dangerously low levels when a person is asleep. The artificial pancreas, also known as closed-loop control, is an “all-in-one” diabetes management system that tracks blood glucose levels using a continuous glucose monitor (CGM) and automatically delivers the hormone insulin when needed using an insulin pump. The system replaces reliance on testing by fingerstick or CGM with separate delivery of insulin by multiple daily injections or a pump. “Testing the safety and effectiveness of new technologies in real-world settings is critical to prove the usability of these systems by people with diabetes to achieve a better daily control of their blood glucose levels,” said Guillermo ArreazaRubín, M.D., director of NIDDK’s Diabetes Technology Program and project scientist for the study. “Earlier technologies have made the management of type 1 diabetes easier, and this research shows that this artificial pancreas system has the potential to improve the health of people living with type 1 diabetes, while also potentially lifting much of the burden of care from those with the disease and their caregivers.”
The Control-IQ artificial pancreas system was derived from research done at the Center for Diabetes Technology at the University of Virginia.
Dr. Wadwa added, “I would like to say that the contributions from our study team would not be possible without the support that Greg and I have received from the Barbara Davis Center, the Children’s Diabetes Foundation, our incredible team of study coordinators, investigators and staff; and most of all our amazing patients and participants in this study.”
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THE TIED TO A CURE LAS VEGAS GOLF FLYAWAY The Tied to a Cure Las Vegas Golf Flyaway, presented by McDonald Automotive,
is the getaway of a golfer’s dreams! On Thursday, October 24th, over 100 golfers boarded a chartered flight to Las Vegas for a gorgeous day of golf at Shadow Creek Golf Course with an overnight stay at the Aria Hotel. The event kicked-off in Denver with a high-end wine pull, poker games, open bar, and breakfast. Joe Smolen, Children’s Diabetes Foundation (CDF) board member and Senior Vice President of Core Markets at Empower Retirement, conducted a live auction and spoke about his experience of being a parent of a child with type 1 diabetes. The morning also included speeches from the event chairs – Michael McDonald and Dan Fuller, CDF’s Executive Director Dana Davis, and the Smolen family. Abbey Smolen was 12 years old when she was diagnosed with type 1 diabetes and is supported by her loving parents Joe and Juli. The Smolen family talked with golfers on the course in Las Vegas and requested donations to help type 1 kids like Abbey. 100% of the day’s golfers made personal donations to CDF to support diabetes research, patient support, and public awareness. Since 2010, the Tied to a Cure golf tournaments, held in both Denver and Las Vegas, have raised an astounding $5.5 million for CDF. A huge thank you to everyone who attended, sponsored and supported this tournament. A special thank you to Michael, Dan, and Todd for chairing this event year after year and making it the enormous success it is. To participate in the 2020 Tied to a Cure tournaments, please contact Amanda Miller at Amanda@ChildrensDiabetesFoundation.org.
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THANK YOU FOR HELPING THE CHILDREN'S DIABETES FOUNDATION SPARK SOME END-OF-YEAR
CHEER
Your donations to our Holiday Assistance program have helped the 86 families and 255 children in need who applied for assistance this year. Every year, the number of families in need of support increases, and we appreciate your support more than ever!
We accept donations to the Holiday Asisstance program year-round at ChildrensDiabetesFoundation.org/holiday-assistance
Special thanks to the families and Guild members who spent the day making holiday crafts with us at the annual Holiday Assistance party!
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ADVOCATE HOLIDAY PARTY CDF Advocates and their
families had a blast at their annual holiday party this December! Everyone enjoyed ornament making, delicious food, and of course, a visit from Santa Claus. Thank you to everyone who came to the celebration and we can't wait for 2020!
What is the Children’s Diabetes Foundation Advocate program? The Children’s Diabetes Foundation’s (CDF) Advocate Program was created in 2017 for individuals with type 1 diabetes (T1D) between the ages of 6 and 22, who want to educate, volunteer, and socialize with other type 1s. These Advocates are the face of CDF and exude a positive attitude about T1D while creating awareness for the Children's Diabetes Foundation. Advocates get together for quarterly social events to promote friendship, support, and more. Who can be an Advocate? Any person with T1D between the ages of 6 and 22 can be an Advocate. There is no fee associated with the program to become a member. What do Advocates do? An Advocates job is to educate others about T1D and exemplify good character while representing the CDF. This is done through social events such as Spring Brass Ring Luncheon, Run for the Ring, Carousel Ball, and other CDF events that take place throughout the year. Advocates are also encouraged to write blog posts, hang up flyers in their community, and more to raise awareness for CDF and T1D.
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THE GUILD
HOLIDAY PARTY
This December, The Guild of the Children’s
Diabetes Foundation met at the home of Shelly Lucas to celebrate the holidays and the end of a fantastic 2019! The group also named the new members of their Executive Board for the coming year:
The Guild is a volunteer membership group that helps fund research at the Barbara Davis Center and various Children’s Diabetes Foundation programs such as Helping Hand, Education and Awareness, Helping Little Hands, and the Charlotte Tucker Scholarship. The Guild also hosts annual fundraising events including the Spring Brass Ring Luncheon and Fashion Show, High Hopes Golf Tournament, Run for the Ring, and Jewels for Hope sales.
Top row: Cheryl Lebsock, Past President; Linda Chase, Treasurer-Elect Second row: Katie Grassby, Treasurer; Susan Squyer, Corresponding Secretary Bottom row: Brenda Neyman, Recording Secretary; Lisa Corley, President Not pictured: Lori Finch, President-Elect
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Barbara Davis Center & Children’s Diabetes Foundation Present:
April 25, 2020
9:00 AM to 3:30 PM
Sheraton Denver Downtown Hotel
Pediatric, Adult, and Advanced Workshops
Keynote: Building Connections The Children’s Diabetes Foundation and the Barbara Davis Center for Diabetes present the annual EPIC (Empowering Patients for Individualized Care) Diabetes Conference, a one-day interactive, supportive, and uplifting experience for patients, families, friends, and caregivers of those with any type of diabetes.
Interactive: Ask Your Questions
This conference is a great way to continue your diabetes education outside of appointments and learn from the nation’s top diabetes specialists through presentations, Q&A sessions, and panel discussions.
$10 Registration
Connect with Others & Industry Reps
Theme: Connectivity
Workshops by Top Diabetes Experts
www.EPICconferences.org 21
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COMMUNITY CORNER
Welcome to our newest section, Community
Corner, where we celebrate the happy milestones in our type 1 community. If you’d like to share your diagnosis anniversaries, weddings, birthdays, or other special occasions with us, please contact Brent@ ChildrensDiabetesFoundation.org.
SEPTEMBER 22
Andrew Black and Kenna Dougherty (T1D) tied the knot in Denver, CO. Kenna’s mother, Carole Kaiser, serves on several committees of the Guild of the Children’s Diabetes Foundation including the Charlotte Tucker Scholarship selection committee, Helping Little Hands, and Jewels for Hope. Congratulations, Andrew and Kenna!
NOVEMBER 8
Paige, CDF’s Community Engagement Manager, celebrated her 15th year with type 1 diabetes. Happy diaversary, Paige!
NOVEMBER 20
Betsy, Pediatric Diabetes Educator at the BDC, celebrated her 22nd year with type 1 diabetes. Happy diabirthday, Betsy!
Children’s Diabetes Advisory Board Members and Guild Presidents ADVISORY BOARD:
THE GUILD PRESIDENTS:
Sir Michael Caine Mr. and Mrs. Robert A. Daly The Honorable Diana DeGette, U.S. House of Representatives, Colorado Mr. Neil Diamond Mr. Placido Domingo Mr. John Elway Mr. David Foster Mr. Kenny G Mr. David Geffen Mr. Magic Johnson Mr. Quincy Jones Ms. Sherry Lansing Mr. Jay Leno Mr. Paul Marciano Mr. Mo Ostin Sir Sidney Poitier Mr. Lionel Richie Mrs. Adrienne Ruston Fitzgibbons Mr. George Schlatter Ms. Maria Shriver Mr. Steven Spielberg and Ms. Kate Capshaw Ms. Brenda Richie Ms. Barbera Thornhill Miss Joan van Ark Mr. Gary L. Wilson Mr. Stevie Wonder
Founding President, Amy Davis Mrs. Gina Abou-Jaoude Mrs. Christy Alberts Mrs. Jamie Angelich Mrs. Karen Aylsworth Mrs. Linda Broughton Mrs. Tangy Buchanan Mrs. Joy Burns Dr. Bonita Carson Mrs. Nancy Cowee Mrs. Dalyla Creaghe Mrs. Margy Epke Mrs. Chris Foster Mrs. Helenn Franzgrote Mrs. Sally Frerichs Mrs. Debbie Gradishar Mrs. Helen Hanks Mrs. Marty Jensen Mrs. Gail Johnson Mrs. Sharon Kamen Mrs. Janet Knisely Mrs. Cheryl Lebsock Mrs. Shelley Lucas Mrs. Suzy Love Mrs. Judy McNeil Mrs. Sally Newcomb Mrs. Barb Oberfeld Mrs. Gretchen Pope Mrs. Carol Roger Mrs. Kay Stewart Mrs. Diane Sweat Mrs. Loretta Tucker Mrs. Jane Weingarten
See complete list at ChildrensDiabetesFoundation.org
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Nonprofit Org. U.S. POSTAGE
PAID Denver, CO Permit No. 1752
Children’s Diabetes Foundation 4380 South Syracuse Street Suite 430 Denver, CO 80237
Change Service Requested
Newly diagnosed? Hit a rough patch? Want to talk with other T1Ds?
YOU ARE NOT ALONE You are welcome at any Children's Diabetes Foundation support group in the Rocky Mountain Region Denver Metro
Douglas County
Colorado Springs
Central Rockies
Rifle
Cheyenne, WY
Fort Collins
Sterling
"The Keepers" in Denver (parents & caregivers) Time and meeting locations vary, so join our mailing list at ChildrensDiabetesFoundation.org/support-groups
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