NewsNotes - Spring 2018

NEWSNOTES CHILDREN’S DIABETES FOUNDATION — SPRING 2018

EPIC DIABETES CONFERENCE

Educating those with Type 1 and Type 2 Diabetes Photo: © Anya Semenoff

MARCH 3RD, 2018 IN DENVER, CO, EDUCATING THOSE WITH TYPE 1 AND TYPE 2 DIABETES Anyone affected by type 1 or type 2 diabetes knows the maintenance and diligence it

requires to manage blood sugars every single day. As if that’s not difficult enough, the physical, emotional, social, and behavioral stressors can make the disease even more overwhelming.

With all of these issues, it’s no wonder that every question can’t be answered at every doctor’s appointment. It’s also essential to have a team of support that understands the intricacies of diabetes.

For these reasons, the Children’s Diabetes Foundation and the Barbara Davis Center decided to create an educational conference that brings people together in an open, supportive environment, where they can learn tips and tricks from top specialists, developers, and researchers.

The 2018 EPIC Diabetes Conference marks the second annual conference and educated attendees through workshops, patient panels, Ed Damiano’s keynote presentation, and exhibitors. This one-day conference took place on March 3rd, 2018 in Denver, CO, and educates those with type 1 and type 2 diabetes, as well as their family, friends, caregivers, and healthcare providers.

Attendees were able to attend workshops that focused on: • • • • • • •

Emotional and mental health Hypoglycemia Hyperglycemia Diabetes in school and camps Getting older with diabetes Finding and Treating Autoimmune Diseases Puberty and Transitioning to Adult Medicine Photos © Anya Semenoff

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In each workshop, the speaker gave an introduction to the session topic and then invited the audience to ask questions. This gave attendees the opportunity to address specific questions related to their individualized care and to learn from other people’s experiences.

The event also featured a patient panel, comprising of adult and pediatric patients who had experiences with exercise, depression, and pregnancy with diabetes. Diabetes certainly adds its own difficulties to all of these scenarios and everyone in the room could relate to the struggles and successes that each panelist shared. It was an important reminder that everyone is fighting their own personal battles, but with support from one another, we can get through anything!

A true highlight of the event was the keynote speaker, Ed Damiano of Beta Bionics, Inc. Ed is part of a key team creating the bionic pancreas. His wife, a physician, diagnosed their infant son, David, with type 1 diabetes over 17 years ago and this inspired Ed to create a bionic pancreas that David could take to college. Ed recently co-founded Beta Bionics, Inc. to commercialize a fully integrated, wearable, bionic pancreas device called the iLet that operates independently of a smartphone. The company plans to ready this integrated device for clinical testing this year at the Barbara Davis Center and other clinical sites and will conduct the final clinical trial testing the first commercial version of this device in early 2019. This exciting technology will completely change how people manage their diabetes and it gives so much hope for the future of diabetes care. See page 7 for more information on the iLet. Thank you to our lead sponsor Sanofi US. Thanks also go to the many conference exhibitors who greatly contributed to and attended the event!

This conference was a collaboration between the Children’s Diabetes Foundation and the Barbara Davis Center.

To stay connected and receive conference updates visit www.EPICconferences.org, the EPIC Diabetes Conference Facebook page, and Children’s Diabetes Foundation’s social media pages.

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“This was such a positive thing for me to attend and seeing the community of diabetes really made me feel like I wasn’t alone and people understood what I was going through. So supportive and kind.”

“Everyone speaking was very knowledgeable and you were able to tell that they had a passion for what they were doing.”

Photos © Anya Semenoff

“I loved the speakers and hearing what they had to say about diabetes. This was my first conference and I had such a positive experience that I will be returning every year!”

“I feel like we learned something in each workshop. Plus it was so nice to see so many in the same place in life as us.”

“I really appreciate the conferences and being able to be in touch with so many experts in small groups. Any chance to be around such engaged and supportive people boosts our wellbeing.”

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“Even though I’ve had T1 for some time and think that I have it managed fairly well, I still learned some new things that I think were important to apply in my everyday life."

“The speakers were very knowledgeable and professional, but were open and positive. They were available for questions and genuinely interested in our questions."

“Speaker knowledge was excellent and they covered both basic and more advanced pieces so everyone could learn something new.”

“I’m not diabetic, but learning about caffeine and blood sugars will help me better help my patients.”

“Everyone was so friendly and helpful. I LOVED seeing all the pumps and CGMs. My daughter is hesitant about wearing either and now she is considering it!”

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AT THE EPIC DIABETES CONFERENCE, WE PUT UP A POSTER ASKING PEOPLE:

Photo © Anya Semenoff

• • • • • • • • • • • • • •

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It has helped me realize how strong and brave I am I made friends and I know I’m not alone The community that came with it Strength Diabetes camp We appreciate the little things more The relationships we have because of diabetes are some of the most important people in our life… they are priceless!

Compassion for others and the daily struggles we all have Better diet and realization that what we thought was important, isn’t My newly diagnosed 17 year old and I have become closer and I have realized how STRONG she is!!

It helped our daughter recognize her son’s symptoms sooner at his onset of diabetes Without my diabetes I would not be an advocate for people suffering from type 1 in developing nations around the world I made lots of friends Now I want to be a doctor!

• • • • • • • • • • • • • • • •

Amazing people I never would’ve met other wise. Love you camp girls!

When I am low I get candy or juice I am healthy I did not let anything get in my way Every other week I get to leave class to go eat and chill in the health office, so that’s pretty cool I met Tavia!

Time with my 9 year old daughter I’m learning a new lifestyle It made me realize that I’m a beautiful person inside & out You get to eat chandy when you are low I made friends from around the world Eating healthier I became a diabetes educator so I can help others with diabetes Making friends adult & kid It helped me to grow up and be independent Friends!

INSULIN & GLUCAGON IN ONE DEVICE The keynote speaker at the 2018 EPIC Diabetes

Conference, Ed Damiano, PhD, shared exciting insights on the iLet®, a dual-hormone (insulin and glucagon) bionic pancreas that will change the way type 1 diabetes and hypoglycemia are cared for around the world.

Ed is the co-founder of Beta Bionics, Inc., which is a Massachusetts public benefit corporation committed to innovating, developing, commercializing, and disseminating this product. For a little over a dozen years, this group has been developing, integrating, and testing various bihormonal bionic pancreas technologies for automatic regulation of blood sugars in people with type 1 diabetes.

The technology has evolved greatly in the past 15 years: Stage 1 The bionic pancreas started as a clumsy system of interconnected pumps and sensors cobbled together around a laptop computer. The laptop version of their bionic pancreas was tested first in a diabetic swine model of type 1 diabetes at Boston University between 2005 and 2009 and then in inpatient clinical trials with collaborators at the Massachusetts General Hospital (MGH) between 2008 and 2012 in adults and adolescents with type 1.

Stage 2 The system upgraded to run on an iPhone, which wirelessly communicates with two infusion pumps and a sensor. Between 2013 and 2016, Beta Bionics, Inc. conducted several outpatient clinical trials with the iPhone version of the bionic pancreas together with clinical collaborators at MGH, Stanford, the University of North Carolina, and the University of Massachusetts.

Stage 3 Finally, the ultimate embodiment of the system includes a dual-chamber infusion pump, a sensor, and mathematical algorithms all housed within a single compact integrated device, which is called the iLet (in homage to the pancreatic islets of Langerhans which contain the alpha and beta cells that secrete glucagon and insulin).

DIABETES NEWS

DUAL-HORMONE BIONIC PANCREAS

Beta Bionics plans to ready this integrated device for clinical testing later this year and then conduct the final clinical trial testing the first commercial version of this device in the second half of next year.

This device could sincerely be a game-changer for the diabetes care industry by removing a great deal of the burden on patients and their caregivers. Follow the Children’s Diabetes Foundation on Facebook, Twitter, and Instagram to see updates on diabetes research and technology.

Photo © Zachary Reece

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DIABETES NEWS

EXISTING DRUG EFFECTIVE

AT PREVENTING ONSET OF TYPE 1 DIABETES A drug commonly used to control high blood pressure

may also help prevent the onset of type 1 diabetes in up to 60 percent of those at risk for the disease, according to researchers at the Barbara Davis Center and the University of Florida (UF).

“This is the first personalized treatment for type 1 diabetes prevention,” said Aaron Michels, MD, a researcher at the Barbara Davis Center for Diabetes and Associate Professor of Medicine at CU Anschutz. “We made this discovery using a supercomputer, on the lab bench, in mice, and in humans.”

The drug, methyldopa, has been used for over 50 years to treat high blood pressure in pregnant women and children. It is on the World Health Organization’s list of essential drugs.

But like many drugs used for one condition, Michels and his colleagues found it useful for something totally unrelated.

MOLECULAR BLOCKING Some 60 percent of people at risk of getting type 1 diabetes possess the DQ8 molecule, which significantly increases the chance of getting the disease. The researchers believed that if they could block specifically the DQ8 molecule they could also block the onset of the disease.

“All drugs have off-target effects. If you take too much acetaminophen you can hurt your liver,” Michels said.

“We took every FDA-approved small molecule drug and analyzed HLA-DQ8 binding through a supercomputer.

We searched a thousand orientations for each drug to identify those that would fit within the DQ8 molecule binding groove.”

After running thousands of drugs through the supercomputer, they found that methyldopa not only blocked DQ8, but it didn’t harm the immune function of other cells like many immunosuppressant drugs do.

The research spanned 10 years and its efficacy was shown in 20 type 1 diabetes patients who took part in a clinical trial at the Barbara Davis Center.

“We can now predict with almost 100 percent accuracy who is likely to get type 1 diabetes,” Michels said. “The goal with this drug is to delay or prevent the onset of the disease among those at risk.”

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The drug is taken orally, three times a day.

Photos © JensenSutta.com

Michels and UF Health researcher v, hope this same approach of blocking specific molecules can be used in other diseases.

“This study has significant implications for treatment of diabetes and also other autoimmune diseases,” said Ostrov, Associate Professor of Pathology, Immunology and Laboratory Medicine at the UF College of Medicine.

“This study suggests that the same approach may be adapted to prevent autoimmune diseases such as rheumatoid arthritis, coeliac disease, multiple sclerosis, systemic lupus erythematosus and others.”

The next step will be a larger clinical trial in the spring.

“With this drug, we can potentially prevent up to 60 percent of type 1 diabetes in those at risk for the disease,” Michels said. “This is very significant development.”

DIABETES NEWS

IMPLICATIONS FOR TREATMENT

Other authors of the study include: Aimon Alkanani of the Barbara Davis Center at CU Anschutz; Kristen McDaniel of the Barbara Davis Center; David Ostrov of the University of Florida in Gainesville; Stephanie Case of the Barbara Davis Center; Erin Baschal of the Barbara Davis Center; Laura Pyle of the Barbara Davis Center and Colorado School of Public Health; Sam Ellis of the Barbara Davis Center and Dept. of Clinical Pharmacy at CU Anschutz; Bernadette Pollinger at the Novartis Institutes for Biomedical Research in Basel, Switzerland; Katherine Seidl at Novartis; Viral Shah at the Barbara Davis Center; Satish Garg at the Barbara Davis Center; Mark Atkinson at the University of Florida and Peter Gottlieb at the Barbara Davis Center.

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DIABETES NEWS

TYPE 1 DIABETES vs.

TYPE 2 DIABETES Written by: Shideh Majidi, MD Assistant Professor, Pediatric Endocrinology

It is very common for people who don’t have type 1

diabetes to confuse type 1 with type 2 diabetes. Adults (and occasionally teenagers) can be diagnosed with type 2 when, in fact, they have type 1. So what is the difference between the two and how can someone tell if they may have been misdiagnosed?

Type 1 is an absolute deficiency of insulin due to an autoimmune process. The only treatment is insulin via injections or an insulin pump. Type 2 is predominately due to insulin resistance. This means that the body is able to make insulin, but because it does not respond well to insulin (“insulin resistance”), it now needs more insulin than it can produce. Sometimes type 2 can be treated with diet and exercise or oral medications, and sometimes it also needs to be treated with insulin.

In both cases, people usually have symptoms of extreme thirst and needing to urinate a lot. However, it is much more common for someone with type 1 to be severely ill at diagnosis than those with type 2, who often do not feel sick at diagnosis. Both types can run in families, but people with type 2 are much more likely to have a relative with type 2. Most people with a new diagnosis of type 1 have no known relative with the disease.

Photos © JensenSutta.com

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Over 90% of children with diabetes have type 1, while the majority of adults with diabetes have type 2. However, type 2 can be seen in children (most often in overweight or obese children after puberty has started) and type 1 can occur in adults (often adults with type 1 are leaner at diagnosis than those with type 2). In adults with type 1, it can sometimes take longer to lose the cells that make and release insulin (islet cells) compared to children, which can make it harder to distinguish between the two types.

When a child presents with diabetes, antibodies are often obtained and this, in addition to other clinical factors, are used to diagnose type 1 versus type 2. If someone is misdiagnosed as type 2, they will notice that symptoms and blood sugars are not improving or are worsening on oral medications. They may continue to lose weight and will often become more and more ill until insulin is started. Children will notice this more rapidly than adults will. If there is any concern for misdiagnosis, it is important to talk with your doctor. Obtaining diabetes autoantibodies can help in determining whether someone has type 1.

H. Peter Chase, MD

Q:

How useful are the trend arrows on my Continuous Glucose Monitor (CGM)?

an earlier NewsNotes you stated Intra-nasal Q: InGlucagon would soon be coming. Is it now available?

A:

This could be answered in one word: Very. Unfortunately, they have to be used and thought about (with a “Thinking-Scale”) in order to be very effective. Our DirectNet Study group (2008) originally studied and reported a method of increasing or decreasing the insulin dose by 20% with the maximum arrow changes, 10% with intermediate arrow changes, or no change with a horizontal arrow. The addition of the “Thinking-Scale” requires consideration of food recently eaten (often causing maximum upward arrows with insulin already having been given, also known as increase in insulin on board). Thus one would not increase a dose by 20%. A second factor is exercise and, if it was about to occur, the 20% correction would similarly be lowered. Examples of combining percent changes and “Thinking-Scales” are given in the 3rd edition of Understanding Insulin Pumps, CGMs and the Artificial Pancreas (available at www.

ChildrensDiabetesFoundation.org/books). An additional factor to consider in relation to use of the arrows was suggested in a 2017 article of which Dr. Gregory Forlenza from the Barbara Davis Center was a co-author. They suggested varying the insulin dose adjustment for the arrows based on the subject’s correction factor (insulin sensitivity). Thus, if a person is very sensitive to insulin and has a high correction factor (e.g., one unit of insulin per 130mg/dL), the insulin dose adjustment is low (e.g., 0.5 unit for double arrows). In contrast, if the person is not as sensitive to insulin and the correction factor is low (e.g., one unit of insulin per 30mg of glucose), the insulin dose adjustment would be greater (e.g., 4 units of insulin for double arrows).

A:

Again, the answer in one word: No. Although it will certainly be available in 2018, it is taking longer than expected. The reason is unknown, but I would guess the production of the intra-nasal glucagon in large quantities is one factor. It was shown as effective as the injectable glucagon, and once it becomes available, millions of families (with either type 1 or type 2 diabetes) and every school in the country having a child with diabetes, will want the Intra-nasal form. The immediate demand will have to be met and it will be enormous.

In summary, the main thing is to look at the arrows (as well as the trend graph), consider other pertinent factors, and find out what works for a given person.

Do you have questions you would like to submit to the Q & A?

Contact Mattie Peck at Mattie@ChildrensDiabetesFoundation.org

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THE GUILD

HELPING HAND PROGRAM If you had to choose between your child’s life and paying your mortgage, what would you choose?

The answer is a no-brainer, but luckily, it’s a choice that Barbara Davis Center families will never need to make thanks to the Children’s Diabetes Foundation’s Helping Hand Program. The program provides medical supplies, emergency care costs (such as life alert or a hospital stay), medical alert IDs, new onset bags for newly diagnosed children, appointment costs, and travel costs for appointments.

This program helps the 40% of Barbara Davis Center patients who are uninsured or underinsured. The cost of diabetes care and supplies can be devastating to a family in financial need, but the Children’s Diabetes Foundation is always here to help.

In the past 10 years alone, The Guild of the Children’s Diabetes Foundation has provided over $1 million to the Helping Hand Program “The social workers at the BDC could not do their job without the support of CDF’s Helping Hand Program.

We are so fortunate to have the ability to purchase and provide diabetes supplies for families that are either uninsured or underinsured. The out of pocket cost for supplies like insulin pens, insulin, blood glucose test strips, meters, and needles can cost over $1,500 per month without insurance. The Helping Hand program provides our families with a sense of relief, they know that even when the going gets tough, they can still make sure their children are receiving the diabetes care they require to survive. Helping Hand serves on average 30-50 families each month and we are so lucky to have their support!”

- Ellen Fay-Itzkowitz Social Worker at the Barbara Davis Center

Over 1,000 families helped in 2017!

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Photos © JensenSutta.com

We are excited to invite Barb Oberfeld as the 2018 Guild

President. Barb came to volunteer with the Children’s Diabetes Foundation when her friend and previous Guild President, Shelley Lucas, invited her to a meeting. They both had a commitment to making the community better not just for their own kids, but for everyone’s kids.

Barb shared her inspiration for dedicating herself to this cause:

Not only do I want to live in that community, I want to volunteer alongside all of you to make that happen.”

Barb is a true leader of this group and a testament to the force it has become for the diabetes community.

We are excited for the difference The Guild will make for the many families affected by diabetes throughout 2018 with Barb Oberfeld as their leader.

THE GUILD

NEW GUILD BOARD MEMBERS

“As the number of children diagnosed with type 1 diabetes continues to climb, I want to live in a community that extends a helping hand to families with children recently diagnosed so they can afford the monthly supplies necessary for their child to survive.

I want to live in a community that provides many of those same families in need with holiday gifts and dinners.

I want to live in a community that puts on sugar-free Halloween parties, fun runs, fishing trips, and other social events so that type 1 kids and their families can have a worry-free, enjoyable time.

I want to live in a community that provides college scholarships to type 1 students so they can continue their education and go forth to make the world a better place.

I want to live in a community that finds innovative ways to raise funds to do all of this and more.

I want to live in a community that finds a cure.

2018 Guild Board President Barb Oberfeld President-Elect Cheryl Lebsock Treasurer Lori Finch Treasurer-Elect Betsy Sklar Recording Secretary Chris Petre Corresponding Secretary Carole Kaiser

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HAILEY KIKER FUNDRAISER When Hailey Kiker had her birthday party, she didn’t ask for presents like a normal 5 year old – she asked for donations to the Children’s Diabetes Foundation!

We’re in love with her spirit and her attitude – especially when she said, “If we don’t find a cure in a year, BOOM, we’ll do it again!”

NewsNotes will be published quarterly by the Children’s Diabetes Foundation. We welcome your comments.

If you would like to submit an article or a letter to NewsNotes, send information to: Mattie@ childrensdiabetesfoundation.org Zachary Reece Graphic Designer Mattie Peck Dana Davis Editors

Children’s Diabetes Foundation Board Members and Guild Presidents EXECUTIVE BOARD: Mrs. Barbara Davis, Chairman Dana Davis, Executive Director Richard S. Abrams, M.D. Mr. Peter Culshaw 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. Mr. Shane Hendryson Mrs. Arlene Hirschfeld Mrs. Deidre Hunter Mr. Shawn Hunter Mrs. Tracy van Orman Mr. Cameron van Orman Mr. Ken Rickel John J. Reilly, Jr., M.D. Vice Chancellor for Health Affairs & Dean, School of Medicine, University of Colorado Denver Mrs. Stacy Mendelson Robinson Marian Rewers, M.D., Ph.D. Ex-Officio Member SCIENTIFIC ADVISORY BOARD: Richard S. Abrams, M.D. Director, Colorado Preventive Medicine, Rose Medical Center; Clinical Professor of Medicine UCD Mark Atkinson, Ph.D. Professor of Pathology & Pediatrics, Director, University of Florida Diabetes Institute 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

Steven Kahn, MB, Ch.B. Professor of Medicine, Director of the Diabetes Research Center, University of Washington Rudolph Leibel, MD Professor of Pediatrics and Medicine, Co-Director, Naomi Berrie Diabetes Center, Columbia University Alvin Powers, MD Professor of Medicine, Molecular Physiology/Biophysics, Division Director, Vanderbilt University William Tamborlane, MD Professor of Pediatrics, Yale University School of Medicine ADVISORY BOARD: 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 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

THE GUILD PRESIDENTS: 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. Shelley Lucas Mrs. Suzy Love Mrs. Judy McNeil Mrs. Sally Newcomb Mrs. Gretchen Pope Mrs. Carol Roger Mrs. Kay Stewart Mrs. Diane Sweat Mrs. Loretta Tucker Mrs. Jane Weingarten

Matthias Hebrok, Ph.D. Professor in Residence and Director, Diabetes Center, University of California, San Francisco

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