Volume 13, Issue 1

Winter 2014-2015

The Pediatric Newsletter, along with news of pediatric events, is distributed by e-mail. To sign up for e-mails, go to: http://www.joslin.org/phs/pediatric_e-mail_signup.html

Newsletter of the Pediatric, Adolescent and Young Adult Section

“Frozen” and Its Connection to Diabetes Many people identify with fictional characters in books, television, and film, often looking to them for an emotional connection, but there are not many fictional characters with diabetes. Now, the diabetes community can add one more to their list. This September, Disney’s creative director John Lasseter revealed the movie’s main character, Elsa from Frozen, was directly inspired by those with type 1 diabetes.

In the ABC special, The Story of Frozen: Making a Disney Animated Classic, Lasseter explained that Elsa was originally conceived as a villainous queen complete with blue skin,

spiky hair, and the ability to freeze hearts. But over the course of production, Lasseter started seeing Elsa in a different light. Elsa’s frosty curse reminded Lasseter of his son Sam, diagnosed with type 1 diabetes at age 10. “This little guy was being poked with needle after needle after needle and he asked, ‘Why me?’” said Lasseter. “And I thought of Sam as I was thinking of Elsa. She was born with this. Why is she a villain?”

Inspired, Lasster asked songwriting team Robert Lopez and Kristen Anderson-Lopez to write a sympathetic song for Elsa about her isolation. The song “Let it Go” was born and the entire story was rewritten. Hopefully, knowing the parallels between Elsa’s powers and managing diabetes, children with diabetes may forgo the reflex to “Conceal, don’t feel, don’t let them know” as Elsa’s parents suggested. Her realization, “I don’t care what they’re going to say,” is empowering. Kids may be inspired by Elsa to start a conversation about their diabetes.

Debbie Butler, who serves as Associate Director for the Pediatric Programs at Joslin, was surprised to learn the story behind Elsa’s character. “I wish I had known before I watched it,” she says. “I don’t think many people know.” Butler thinks that more children should know about the inspiration for Elsa’s character. “This is an important mes-sage to help create more awareness about type 1 diabetes,” she says.

Some exciting new research was published in the journal Cell this past October. The title of the article is “Generation of Functional Human Pancreatic β Cells in Vitro”. This study was conducted by Harvard researchers led by Dr. Doug Melton. The researchers were able to produce insulin producing beta cells in massive quantities from human embryonic stem cells, which had not been done before. This research could help individuals with both type 1 and type 2 diabetes.

Dr. Melton was interviewed for an article on a Harvard website and we pulled a couple of his quotations from the website link listed below.* Melton said, “You never know for sure that something like this is going to work until you’ve tested it numerous ways... We’ve given these cells three separate challenges with glucose in mice and they’ve responded appropriately; that was really exciting… It was gratifying to know that we could do something that we always thought was possible, but many people felt it wouldn’t work… If we had shown this was not possible, then I would have had to give up on this whole approach. Now I’m really energized… We are now just one pre-clinical step away from the finish line.”

We asked Dr. Laffel, the chief of Pediatrics, about her thoughts on these findings. Dr. Laffel said that, "These are exciting results as human beta cells in a mouse model were able to release insulin in response to glucose. The insulin-producing human beta cells were derived from human stem cells. It is important to recognize that this research is an amazing first step on a long path towards making such therapies available for humans, which can still take years." (*http://hsci.harvard.edu/news/stem-cells-billions-human-insulin-producing-cells)

Exciting New Findings in the Field of Stem Cell Research

Endocrinologists/Research Faculty

Lori Laffel, MD, MPH

Section Chief

Michelle Katz, MD, MPH

Asst. Clinical Director of Pediatrics

Angelina Bernier, MD

Allison Cohen, MD

Bharti Deswal, MD

Kate Garvey, MD, MPH

Anat Hanono, MD

Elvira Isganaitis, MD, MPH

Sanjeev Mehta, MD, MPH

Clinical and Research Fellows

Osama Baghdadi, MD

Charu Baskaran, MD

Julia Cartaya, MD

Elisa Giana, MD Rebecca Snelgrove Psy.D., LMHC, NCSP

Gabi Telo, MD

Nurse Educators

Joyce Keady, MSN, RN, PNP

Nurse Manager

Ashley Atkins, MSN, RN, PNP

Julie Griffith, MSN, RN, PNP

Brittany Martin, BSN, RN, CDE

Kerry Milaszewski, BSN, RN, CDE Cindy Pasquarello, BSN, RN, CDE Katie Wentzell, MSN, RN, PNP

Administrative Staff

Louise Crescenzi

Manager of Pediatric Operations

Stephanie Holloway

Stella Lu, BS

Medical Assistants/Phlebotomist

Stephanie Ellis

Jessica Ellis

Christopher Wilkins

Child Life Specialists

Micaela Francis, MS, CCLS

Jennifer Griffin, MS, CCLS

Dietitians

Laurie Higgins, MS, RD, LDN, CDE

Heidi Quinn, MS, RD, LDN

Behavioral and Mental Health

Kara Harrington, PhD

Jessica Markowitz, PhD Rebecca Snelgrove Psy.D., LMHC, NCSP

Research Staff

Lisa Volkening, MA, CCRP

Asst. Director, Pediatric Research

Ryan Busha, MHMS

Debbie Butler, MSW, LICSW, CDE

Anna Christian, BA Ming Ding, MD

Jessica El Bach, BS

Kaitlin Gaffney, BS MaoMao Guo, MPH

Anita Kao, BS Maureen Malloy, BS Lisa Rasbach, Ph.D. RN, PNP, BC-ADM Niza Tonarely, MA

Pediatric, Adolescent and Young Adult Section

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Osama Baghdadi, MD - Research Fellow

Osama grew up in a beautiful city by the Red Sea coast called Jeddah in Saudi Arabia. In September, Osama moved to Boston after passing his United States Medical License Exam while living in Virginia for the past year. He is currently doing his research fellowship at Joslin. Osama loves working with children and is fascinated by their imaginative prospective. His particular interest while here at Joslin is the multidisciplinary approach to diabetes care and bringing that back to his country where diabetes affects almost 30% of the population. He loves to play sports: soccer, tennis, squash, and volleyball. He has

traveled to many countries in Europe, Africa, Asia, Australia, and North America. He hopes to visit Alaska someday. He also loves the ocean and deep sea fishing.

Meet the Newest Members of the Joslin Pediatrics Team!

Elisa Giani, MD – Research Fellow

Growing up in Milan, Italy, Elisa enjoyed the artistic city which is known for its fashion, shops, and historic landmarks. Elisa attended medical school at the University of Milan. Before coming to Boston this past October, Elisa was a resident in the Pediatric Department at the University of Milan. Elisa enjoys her interactions with children and teens and the collaborations with families to try and give them the best care possible and to imagine a new future without diabetes. She loves playing the piano, traveling, visiting art museums, theater,

visiting with friends, swimming, and cooking. No one knows her original hair color.

Bharti Deswal, MD – Endocrinologist

Dr. Deswal grew up in India and moved to Boston in May 2006. She attended graduate school and medical school while in India. She completed her residency in Pediatrics in 2010 and her fellowship in Pediatric Endocrinology in 2013 at Massachusetts General Hospital for Children in Boston. Before working in pediatrics at Joslin, Dr. Deswal was working in the Patti Lab at Joslin. Dr. Deswal is excited to be joining the pediatric team and the emerging opportunities that will one day open doors to a deeper understanding, more effective treatments, and eventually a cure. Her interests include understanding the causes of insulin resistance and type 2 diabetes, by looking at links between nutrition, genes, and insulin. In her free time, Dr. Deswal loves traveling, cooking and music. She also loves spending time with her three children.

Child Life Wish List — here is a link to items the Playroom can use: http://www.amazon.com/gp/registry/wishlist/3KWHVGUV9BS2B/ref=topnav_lists_1 OR go to www.amazon.com and under “Wish Lists” type in “Joslin Diabetes Center – Child Life.”

We thank you ahead of time for your kind support!

Ming Ding, MD – Research Staff

Ming grew up in China and completed her undergraduate and graduate degrees at Peking University. She moved to Boston in 2011 and is a doctoral student at Harvard University - School of Public Health while working at Joslin. Ming’s particular clinical/research interests are nutrition, obesity, and type 2 diabetes. Ming is excited to be at Joslin to see different views on obesity and the diabetes epidemic. Her favorite aspect of working in pediatrics is generating and testing new ideas. Ming loves drinking coffee and reading in her free time.

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The annual American Diabetes Association (ADA) Conference took place earlier in June 2014 in San Francisco. Several of our clinical and research staff attended the conference, along with researchers and clinicians from all over the world. We want to give you a brief summary of the findings of some of our published abstracts. We featured a few of our published abstracts in our last newsletter.

Reexamining Fear of Hypoglycemia Survey in Contemporary Youth with Type 1 Diabetes and their Parents

By K. R. Harrington, M. M. Barstow, L. K. Volkening, J. T. Markowitz, D. A. Butler, & L. M. Laffel

We asked 120 youth with type 1 diabetes who

were using CGM and their parents to fill out the

Fear of Hypoglycemia survey. This survey is

broken up into into a Behavior scale and a

Worry scale. We found that the Fear of

Hypoglycemia survey provides good information

about worry.

Impact of zBMI on LDL and HDL Cholesterol in Childhood Type 1 Diabetes

By M. L. Katz, C. E. Dougher, G. H. Telo, C. Baskaran, R. Philips, L. M. Laffel.

We examined the impact of weight (BMI) on cholesterol levels in 246 youth with type 1 diabetes. We found that lipid levels at age 10 can predict lipid levels by young adulthood. We also found that significant weight loss can help reduce lipid levels. However, significant weight loss can be hard for many individuals so additional interventions are needed to reduce elevated cholesterol levels in youth.

Predictors of A1c Trajectories in Young Teens with Type 1 Diabetes

By J. B. Cartaya, C. E. Dougher, L. K. Volkening, B. J. Anderson, T. T. Wysocki, and L. M. Laffel

Managing diabetes can be difficult during adolescence, which is why we often see elevated A1cs during the teenage years. We studied 282 youth between the ages of 9-14 with type 1 diabetes. We found that some of the factors that effected A1c trajectories were both modifiable (like the fre-quency of blood sugar monitoring) and unmodifiable (like age). Patients who checked their blood sugar less than four times a day had higher A1cs than those who checked their blood sugar more than 4 times a day. Interventions should be aimed at increasing blood glucose monitoring in all youth with type 1 diabetes.

Boston Heart Diagnostics held an event for some of our pediatric patients in Natick on November 3. Staff from Boston Heart Diagnostics built 12 bicycles and donated these bicycles along with 12 bicycle helmets to a few of our patients. The staff also decorated the bikes with streamers and balloons. The bikes were given to 6 boys and 6 girls between the ages of 7 - 9 years old. The kids were so excited and surprised since most of the parents kept it a secret that they would be getting new bikes!

Joslin Researchers Present Abstracts at the 2014 American

Diabetes Association Conference

Great Evening with Boston Heart Diagnostics

VO L UME 13, ISSUE 1 PAGE 4

This fall, Dr. Laffel was promoted by Harvard Medical School to Professor of Pediatrics. As most of you know, Dr. Laffel sees patients in the clinic and is the principal investigator on several research projects at Joslin. Dr. Laffel has also been very active on the national and international policy levels. She is a member of the National Committee for Professional Practice Guidelines for the American Diabetes Association (ADA), inaugural Chair of the ADA’s Working Group on Transitions in Care for Young Adults with Diabetes, and past Chair of ADA’s Youth Strategies Committee. She has also been a member of the Advisory Board of the International Society of Pediatric and Adolescent Diabetes (ISPAD) and a member on the Clinical Advisory Committee for the JDRF.

In 2013, she was the Co-editor of the ADA-JDRF Sourcebook on Type 1 Diabetes through the Lifespan, and this year a co-author of the new “ADA Position Statement on Type 1 Diabetes through the Lifespan.”

Dr. Laffel lectures at undergraduate and graduate levels, and serves as mentor for doctoral students, fellows, and junior faculty. She is an invited speaker at local, national, and international meetings, in areas of pediatric diabetes, childhood obesity, behavioral and outcomes research, and the as-sessment and translation of new technologies in diabetes. She is Principal Investigator on multiple clinical research projects, with grants from NIH, foundations, and industry.

She also participates in the peer-review process for journals and funding organizations locally, nationally, and internationally, reviewing for NIH, JDRF, the French Inserm, the German Research Foundation, Health Research Council of New Zealand, Diabetes UK, and the Dutch Diabetes Research Foundation, among others. She is also an Associate Editor for “Diabetic Medicine.” Congratulations Dr. Laffel!

Dr. Lori Laffel is Named Professor of Pediatrics at Harvard Medical School

How do I connect with other families that have a child with diabetes? I know you have to

keep patient information confidential but can I give you my name to pass on to others?

Unfortunately, we cannot release patient information. We follow very strict confidentiality guidelines from the HIPAA Privacy Rule which mandates that identifiable health information must be kept private. There are several other ways that you can meet other families living with diabetes. At Joslin, we host several family events throughout the year; these are great ways to meet people. In the spring, we host the Teddy Bear Clinic, in the summer we organize Summer Magic and two tours of Fenway, and in the fall we have our Halloween Party. For further details regarding Joslin events, feel free to email: childlife@joslin.harvard.edu. Some families like going to the family camps. In Massachusetts, the Barton Center hosts family events year round. Finally, some families try to get involved with local JDRF (Juvenile Diabetes Research Foundation) or ADA (American Diabetes Association) event. To contact the Barton Center you can call 508-987-2056 or e -mail: info@bartoncenter.org To contact the JDRF in Massachusetts you can call 781-431-0700 or email baystate@jdrf.org and to contact the ADA office in Massachusetts you can call 617-482-4580.

Q&A

Lisa Rasbach earns her Ph.D. in Nursing!

Lisa Rasbach recently defended her dissertation, “Exploring Self-Efficacy in the Current Era of Type 1 Diabetes Management in Youth” to obtain her PhD in nursing. She completed her research under Dr. Lori Laffel and has two published articles related to her dissertation work. The articles are entitled, “Treatment Recommendations Following 3-Day Masked Continuous Glucose Monitoring (CGM) in Youth with Type 1 Diabetes” and “An Integrative Review of Self-Efficacy Measurement Instruments in Youth With Type 1 Diabetes”. Lisa moved from Boston to Baltimore over a year ago due to her husband’s job transfer and currently helps to coordinate a clinical research study through the pediatric endocrine department at Johns Hopkins. We all wish Lisa a BIG congratulations on her degree!

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Research Opportunities and Resources

SGLT2 Blocker Empagliflozin Study

You may consider sending your child to camp this summer. The camps also have weekend and school vacation activities year round. Here is contact information for diabetes camps in the New England area.

Camp Joslin/Clara Barton Camp/Barton Day Camps,

N.Oxford and Charlton, MA: info@bartoncenter.org or 508.987.2056

ADA Camp Carefree, New Durham NH: camp-

coordinator@campcarefreekids.org or 603.219.2901

Camp Surefire, W. Greenwich, RI: info@campsurefire.org or

401.474.1606

Jack Rua Camp for Children with Diabetes, Rehoboth, RI:

KGunderson@peopleinc-fr.org or 508.672.5671

If you want to get general information about diabetes camping

or about camps in other areas, you can visit the Diabetes

Education and Camping Association website:

www.diabetescamps.org

Camp

Description: This study aims to identify youth and adults at risk for type 1 diabetes by testing for diabetes-related antibodies in relatives of people with type 1 diabetes. It involves a single blood test. People who test positive will be eligible for further testing and may be eligible to participate in prevention trials.

Recruiting: Parents, children, & siblings, ages 1-45, and cousins, grandchildren, nieces, & nephews, ages 1-20, of people with type

1 diabetes. http://joslintrialnet.org/

Contact: Sarah Szubowicz at 617-309-4493 or sarah.szubowicz@joslin.harvard.edu

GleeT1D Study

Joslin discussion boards are moderated by Joslin staff and offer a safe place to ask questions about diabetes and to interact with other parents or teens living with diabetes. This is the link for the teen boards:

forums.joslin.org/JoslinDiscussionBoards/41.aspx

And this is the link for the parent boards:

forums.joslin.org/JoslinDiscussionBoards/42.aspx

Here are some other popular online forums -

The American Diabetes Association forums:

community.diabetes.org

The JDRF forums: juvenation.org

The Children with Diabetes forums:

forums.childrenwithdiabetes.com

Glu Community: myglu.org

Pump and CGM Classes

If you are interested in learning more about Insulin Pumps or Continuous Glucose

Monitoring (CGM)

Please call the Pediatric Clinic’s front desk: 617-732-2603

Get Connected

Solution Guide to Puzzle on the back page

Recruiting: Children and teens, ages 10 to 17, with type 2 diabetes to participate in a study of a new oral medication to control blood glucose levels. Description: This study aims to evaluate different doses of a new oral medication already approved for use in adults with type 2 diabetes. The medication, called empagliflozin or Jardiance®, lowers blood glucose levels by increasing the amount of glucose "spilled" into the urine. After an evaluation for eligibility that requires a visit to Joslin Diabetes Center, enrolled participants will receive a single dose of the medication and stay at Joslin during the day and at the hotel across the street for 3 days and 2 nights so that blood and urine samples can be collected. There is a final study visit one week following this 3 day study period. The study will provide all supplies for the study, parking for visits, and hotel accommodations. There is compensation for time and effort. Please contact: Ryan Busha- 617-309-4510 or ryan.busha@joslin.harvard.edu, Kerry Milaszewski- 617-309-4154 or kerry.milaszewski@joslin.harvard.edu

Description: GleeT1D is a study where researchers want to test if Gleevec® (imatinib mesylate) may be of benefit in slowing the body’s destruction of beta cells when given to individuals recently diagnosed with Type 1 Diabetes (T1D). The goal of this study is to preserve beta cells so that the body can continue to produce some of its own Insulin. Even when insulin injections are needed, it is believed that insulin produced by the body can improve overall blood sugar control, make daily management of T1D easier, and may reduce the risk of long-term complications. Participation in the GleeT1D study will last up to 2 years and will involve taking pills (either Gleevec® or a placebo) once a day for 6 months and periodically coming in to Joslin Diabetes Center for follow up visits and lab tests. Recruitment: Seeking individuals who have been diagnosed with type 1 diabetes less than 3 months ago and are 18 to 45 years of age Contact: Brittany Resnick at 617-309-4148 or brittany.resnick@joslin.harvard.edu

Type 1 Diabetes Risk Assessment

The Natural History Study — TrialNet

School Nurse Program

March 14, 2015 8:15am-4:30pm at the Joslin Diabetes Center in Boston, MA. This one-day program will provide school nurses with up-to-date diabetes information in order to create a safe learning environment for students with diabetes. Participants will receive 6.5 contact hours. For all inquiries regarding registration, contact: Stella Lu, 617-309-4530 or stella.lu@joslin.harvard.edu To register for the event please go to: http://www.joslin.org/phs/education_program_for_school_nurses.html

VO L UME 13, ISSUE 1 PAGE 6

Upcoming Events March 21, 2015: 10AM—NOON

at Joslin Diabetes Center

The Joslin’s 12th Annual Teddy Bear Clinic

is just around the corner. Children will receive a new

stuffed animal or bear to care for as they visit various

medical stations for checkups, physical exams, lab

work and much more. RSVP by March 13th to Jen

Griffin at childlife@joslin.harvard.edu or call

617-309- 4529.

Teddy Bear Clinic

On October 18, 2014, the ADA held their annual Step Out: Walk to Stop Diabetes on the Boston Common. Following the walk, children and their families had the opportunity to visit the Joslin Teddy Bear Clinic. Each child who visited the clinic got a new bear, which was generously, donated by Jim and Karen Connelly, along with the Theodore Roosevelt Association. The children took care of their bears at each medical station where they learned about diabetes and overall health. The children checked their bear’s blood glucose, gave them pretend insulin injections, and learned about healthy meals.

Halloween Party - On October 25, 2014, patients and their families gathered at Joslin for our Annual Halloween Party. Everyone came dressed in costume, including staff who had some creative and homemade costumes related to their work here at Joslin. Patients and their families enjoyed getting to know other Joslin patients, families, and staff members while they took part in a variety of Halloween crafts, games, and visiting the Haunted House and pumpkin decorating area.

Thank you to everyone who came!

Caring for Children with Diabetes: Tentative dates: Thurs 4/16, Wed 5/13, and Thurs 6/11 6:30pm-8:30pm, Cost: $30 per person, light supper included. This program provides an introduction to diabetes and how it is managed in children. Topics covered: impact of insulin, food, and activity on management, ways to provide best care for youth, etc. Suitable for grandpar-ents, daycare personnel, nannies, friends & family, any interested party. To register: www.joslin.org/phs/caregivers_classes.html

Teddy Bear Clinic at

ADA Diabetes Walk Past Events

Debbie Butler, MSW, LICSW, CDE

Micaela Francis, MS, CCLS

Jen Griffin, MS, CCLS

Heidi Quinn, MS, RD, LDN

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One Joslin Place, Boston, MA 02215 Pediatric, Adolescent and Young Adult Section: (617) 732-2603

Questions, comments, or suggestions? E-mail childlife@joslin.harvard.edu or call 617-732-2603

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Donation Spotlight

a

Cheesy Snowmen: Yield: 15 cheesy snowmen

Ingredients: 1 lb. block of mozzarella cheese 1 package pretzel sticks 15 dark green/purple grapes 2-3 Tbs. seedless blackberry preserves

Instructions: -Cut mozzarella into groups of 3 chunk sizes (small, medium, large) to make the snowman’s body. -Fill piping bag (or plastic baggie with corner sliced off for piping) with jam and make face on the small-est cheese chunk. Do not make the dots too large or they might drip. -Stack cheese cubes with largest on the bottom and smallest on top. -Slice the bottoms off the grapes for hats and place on top of smallest cheese chunk -Insert toothpick through grape and cheese chunks for ease of picking up. -Insert pretzel sticks into middle cheese chunk for arms. -Place on platter with white doily for look of snow.

Nutrition facts: (estimates ~ 1 oz. regular mozzarella cheese per snowman) Calories: 100 kcal; 6.5g fat; 4g carb, 7g protein

Timmy (12 y/o) was diagnosed with

Type 1 Diabetes in December 2013.

Following his younger brother’s diag-

nosis, Conor (16 y/o) took it upon

himself to learn about

diabetes so he can help his brother.

“One of my goals is to help find a cure for diabetes and I

decided to participate in the JDRF Walk in Boston on September

27, 2014, to raise money in Timmy's name and for all the other

people living with this disease.” Conor raised over $6,000 in

Timmy’s name for diabetes research for the JDRF.

Can you spot the 18 differences in the two pictures?

Jessa was diagnosed with Type 1 Diabetes on August 23, 2012. Jessa, with the help of Showcase Pro Wrestling (a family owned pro wrestling/sports Entertainment Company based out of

Woonsocket, RI) held fundraisers during October and November by doing 50/50 Raffles. Jessa was able to raise $158 for the Joslin Pediatric Playroom. Her parents say, “The playroom is a big part of our visits to Joslin and Jessa looks forward to playing there when we have her quarterly appointments. She can play and learn about her disease not just from the child life specialist but also from the other chil-dren in the room. This room is such a blessing for us as it allows us to sit and talk to our team of doctors, nurses, and nutritionists without her in the room”.

Answers on pg 5