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Volume 11, Issue 1
Spring/Summer 2014
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
BOSTON STRONG! BOSTON MARATHON Two of our research staff, Tina Sullivan and Mariah Barstow, successfully ran the Boston Marathon. Tina is currently working as a research assistant on our Continuous Glucose Monitoring (CGM) study and Mariah used to work on the CGM study. We had the opportunity to meet with both Tina and Mariah right before the marathon. They were at the height of their training and had just completed their longest training runs.
Tina decided to run on Team Joslin because her younger sister was diagnosed with diabetes when she was 13 years old. Tina said that, “Ever since my sister’s diagnosis, I have wanted to help those living with diabetes.” She also said that, “Having run one
marathon independently in 2010 (Boston), I know that training for this marathon and actually running the marathon will be a challenge, but it is nothing compared to the challenges that an individual with type 1 diabetes deals with every day. I really believe that.”
Mariah has also run more than one marathon. Mariah ran the Boston Marathon three times prior to this year and the Chicago Marathon once. Mariah had finished the Boston Marathon right before the tragedy occurred last year in 2013 and knew that she had to run again this year. Mariah said that the Boston Marathon is “such an incredible event that brings out so many different people. It is so fun with all of the crowds along the entire route.” She also said that, “Every town has its own personality. Everyone is so happy, and there is no letting up by the crowds.” Congratulations Tina and Mariah!
Ashland High School boy’s hockey team hosted a charity game “Skate for the Cause” to raise money for diabetes and cancer research. Spencer Wilson, one of the team’s captains and also a Joslin patient, has had type 1 diabetes since he was 8 years old. The team donated $500 to Joslin Diabetes Center’s High Hopes Fund to benefit Tina Sullivan who ran the Boston Marathon for Joslin. The team’s charity games signify a larger effort by high school teams to raise money for positive causes. “Even if we did one charity, I think it's nice for sports teams to give back,” said Wilson.
Dr. Sanjeev Mehta, Tina Sullivan, and Spencer Wilson
Tina
Mariah
Boston Strong Cont. page 3
Endocrinologists/Research Faculty
Lori Laffel, MD, MPH
Section Chief
Michelle Katz, MD, MPH
Asst. Clinical Director of Pediatrics
Bharti Balhara, MD
Angelina Bernier, MD
Allison Cohen, MD
Kate Garvey, MD, MPH
Anat Hanono, MD
Elvira Isganaitis, MD, MPH
Sanjeev Mehta, MD, MPH
Clinical and Research Fellows
Charu Baskaran, MD
Julia Cartaya, MD
Gabi Telo, MD
Nurse Educators Cindy Pasquarello, BSN, RN, CDE Nurse Manager Joyce Keady, MSN, RN, PNP
NP Manager
Ashley Atkins, MSN, RN, PNP
Julie Griffith, MSN, RN, PNP
Brittany Martin, BSN, RN, CDE
Kerry Milaszewski, 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
Kelly Knight
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
Research Staff
Lisa Volkening, MA, CCRP
Asst. Director, Pediatric Research
Ryan Busha, MHMS
Debbie Butler, MSW, LICSW, CDE
Anna Christian, BA
Carly Dougher, MPH
Kaitlin Gaffney, BS
Joanne Hathway, BA Anita Kao, BS Maureen Malloy, BS Lisa Rasbach, MSN, RN, PNP, BC-ADM Tina Sullivan, BA Niza Tonarely, MA
Pediatric, Adolescent and Young Adult Section
PAGE 2 N EWSL ETTER O F THE PE D IATR IC , AD O L ESC EN T AN D YO UN G AD UL T SEC TIO N
Meet the Newest Members of the Joslin Pediatrics Team!
Ryan Busha, MHMS— Senior Research Assistant
Ryan grew up in Vestal, NY and recently moved to Boston at
the end of May. Ryan attended SUNY Geneseo for
undergraduate school and Duquesne University for his
Master’s in Health Management Systems. Before coming to
Joslin, Ryan was a research assistant at Brown University’s
Weight Control and Diabetes Research Center. In his free
time, Ryan enjoys learning new skills like cooking, practicing
yoga, meditation, and marathon running. He is looking
forward to furthering Joslin’s mission of improving the lives of
all people with diabetes.
Kelly Ann Knight—Medical Assistant Kelly grew up in the nearby towns of Canton and Easton. She received her Medical Assistant Certification from the Career Institute of American International College. Before coming to Joslin, Kelly worked as a medical assistant at Compass Medical, Family Medicine for five years. When not working, Kelly enjoys family volleyball games, going to the pool/beach, and participating in 5k obstacle courses. Kelly loves working in pediatrics and thinks the best part is seeing how the patients don’t let diabetes stop them from laughing, playing, and just being fun kids!
Brittany Martin, BSN,RN,CDE—Nurse Educator
Brittany grew up in Perkasie, PA and received her BSN from
Bloomsburg University of Pennsylvania. She moved to Boston
in 2012 for a position working as a diabetes educator for an
outpatient adult endocrinology clinic. After spending two
summers at Camp Joslin, she knew that she wanted to
pursue pediatric diabetes education as a career. She loves
being able to work with the whole family and to learn from
each family’s unique experience. If Brittany was not a nurse,
her alternative career would be a pastry chef. She is very
excited to be part of the Joslin Pediatric Team!
Cecilia Rosenbaum and Nicole Beers - Summer Students
Cecilia is going into her senior year at Vassar College in Poughkeepsie, NY majoring in psychology and will soon be applying to medical school. She is very excited to be joining the pediatric team this summer and learning more about diabetes. “One of the things I love to see about children with diabetes is the level of independence they show. I am amazed everyday with how young children can understand such a complex disease and how to control it”. Nicole just finished her first year of medical school at the University of Buffalo School of Medicine and Biomedical Sciences. She graduated from St. Lawrence University in 2013 with a major in Biology and a minor in Chemistry. Nicole is very impressed to see how, with the support of their families, the children are able to manage diabetes so well while participating in all the activities of childhood and adolescence.
Cecilia and Nicole
PAGE 3 VO L UME 11, ISSUE 1
Upcoming Events Summer Magic! Fenway Park Tour!
Wednesday, August 13th from 1:00-3:00 p.m., for 8-18 year olds!
Join us at Joslin for an afternoon of fun!
Enjoy getting to know the history of Fenway Park while
meeting other Joslin Pediatric families. Light snacks will
be provided. Please RSVP to Jen Griffin at
[email protected] or 617-309-4529.
Kevin Crossman was diagnosed with type 1 diabetes when he was in 1st grade and ever since then, it has changed his life. “I have had many life experiences that have made me a mature, independent young man who is
very motivated and committed,” said Kevin. Kevin’s lifelong goal has been to run the Boston Marathon. “After the events of last year’s Marathon, I thought this would be the best year to complete my dream. Everyone who is running this year should realize how important it will be for the community of running and for everyone around the world who was impacted by the horrific events last April.” said Kevin. Kevin successfully finished the Boston Marathon.
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!
Joslin patient, Lily and her family wanted to give back to Joslin for the wonderful care they receive. The family donated $1,100 for the Joslin Diabetes Center High Hopes Fund to benefit Tina Sullivan who ran the Boston Marathon for Joslin.
Past Events
Joslin Pediatrics was very busy this spring hosting three educational
opportunities for our young patients, families, and caregivers. The
learning began on March 22 at our annual Teddy Bear Clinic. 83
children and their families came out to learn about diabetes and
healthy living. Two weeks later on April
5th, 115 school nurses from all over
New England, New York, Maryland,
and Washington, DC gathered at Joslin
for an intensive full day seminar which enabled them to further their
education and training in diabetes management. Lastly, on April 15th
grandparents, aunts, uncles, and other family members and care
takers came to Joslin to learn about diabetes and how it is managed
in children. All three events were well received by all who attended.
BOSTON STRONG (Cont.)
Teddy Bear Clinic Volunteers
Dr. Shah and the Teddy Bear Clinic
Wednesday July 16th 2014 from 5:00PM -7:00PM at the Joslin Diabetes Center!
Enjoy entertainment from a magician, magical arts and
crafts, and get to know other Joslin Pediatric families. Pizza
will be provided (gluten free also available). Please RSVP
by July 9th to Micaela Francis at
[email protected] or 617-309-4528.
Description: The study will explore ways to help teens with type 1 diabetes improve blood glucose control. The study involves 1 visit to Joslin Diabetes Center every 3 months, over an 18-month period (7 visits total). Study visits can be on the same day as routine diabetes visits and will add an extra 15-60 minutes to the clinic day, including survey completion every 6 months. Families will be randomly assigned to 1 of 4 groups involving Teenwork and/or text messages. For Teenwork, families will review strategies to improve diabetes self-care with a research assistant. For Text messaging, teens will receive text message reminders to check blood glucose levels at self-selected times. The study will pay for parking at each study visit. Participating families will also receive compensation for their time, effort, and a stipend toward text message expenses.
Recruiting: Families of teens ages 13-17 who have had type 1 diabetes for 6 months or more and have a cell phone with text messaging capability
Contact: Niza Tonarely at 617-309-4645 or [email protected]
PAGE 4 N EWSL ETTER O F THE PE D IATR IC , AD O L ESC EN T AN D YO UN G AD UL T SEC TIO N
Research Opportunities and Resources
The Teenwork Project
This summer, consider visiting one of the Diabetes summer camps while they are in session to see if your child might be interested in attending next summer and some of the camps may have space still available. Call the camps and inquire about the best time to visit. There are also weekend and school vacation activities during the winter and spring months at the camps. 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: [email protected] or 508.987.2056
ADA Camp Carefree, New Durham NH: camp-
[email protected] or 603.219.2901
Camp Surefire, W. Greenwich, RI: [email protected] or
401.474.1606
Jack Rua Camp for Children with Diabetes, Rehoboth, RI:
[email protected] 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.
Summer Camp
Type 1 Diabetes Risk Assessment
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 [email protected]
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
This spring, we hosted the annual International Society for Pediatric and Adolescent Diabetes (ISPAD) Research School for Physicians. Twenty five delegates came from 16 different countries to bring diabetes research information back to their centers to improve care. It was a huge success!
Get Connected
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
Description: The purpose of this study is to evaluate the ac-curacy and safety of The Dexcom G4
TM PLATINUM CGM
System using a software modification, called the Spritz algo-rithm modification, for determining glucose levels in toddlers, children, and teens with diabetes. Youth will wear one glu-cose sensor over a 7-day period and check their fingerstick blood glucose levels 7 times daily using a study-provided blood glucose meter. The study involves 2-3 visits over a 7-day period and includes a screening visit, sensor insertion, an in-clinic sampling assessment, and a sensor removal with sensor site inspection. The in-clinic assessment requires 4 hours of fingerstick glucose sampling for children 2-<6 years old; 6 hours of blood and fingerstick sampling for children 6-<13 years old; and up to 12 hours of blood and fingerstick sampling for teens 13-<18 years old. All study supplies will be provided along with parking for study visits and compen-sation for time and effort. Recruiting: Children and teens, ages 2-<18 years, who have diabetes mellitus and are receiving care at Joslin. Contact: Ryan Busha at 617-309-4510 or [email protected]
ISPAD Science School
New 1-week CGM Accuracy Study
VO L UME 11, ISSUE 1 PAGE 5
Retirement for Dr. Alyne Ricker
Dr. Alyne Ricker has worked as an endocrinologist in the Pediatric,
Adolescent and Young Adult Section at the Joslin Diabetes Center for 20
years. During that time she also worked as the co-medical director at
Camp Joslin, what is now known as The Barton Center for Diabetes
Education in N. Oxford, MA. She loves the camps and is a huge
advocate for patient and family participation in camp activities; she will
again be a “camp doc” at Camp Joslin this summer. In addition, Dr.
Ricker has been very involved in research, working with the TrialNet and
DPT- 1 studies and as a member of the Committee on Human Studies
(CHS) at Joslin. Participation in the CHS has been an enjoyable and educational experience; one
that she will continue for awhile. When asked what she will miss most about Joslin after leaving,
she replied, “I will miss my patients and their families, many of whom I have known for more than a
decade. I will miss the collegiality and common goals that everyone on the pediatric team exhibits in
taking care of kids and families who come to Joslin seeking medical care and support as they deal
with diabetes. And I will miss the generosity shown by the whole pediatric staff in supporting each
other in big and small ways.” Dr. Ricker plans to do a lot of traveling in her retirement. Everyone
here at Joslin appreciates Dr. Ricker’s dedication to patients and their families living with diabetes.
She will be greatly missed but we wish her all the best in her future endeavors!
Singing for a Cause - Jacob Wirth Restaurant By Jacqueline Cunniff
For the past 25 years, Mel Stiller has spent his Friday nights playing tunes and leading sing-a-longs in the piano bar at the Jacob Wirth Restaurant in Boston. Patrons eat, drink, and sing oldies and classic rock songs from 8 until midnight. To commemorate the 25
th anniversary, Stiller and the restaurant hosted a
fundraiser for Joslin Diabetes Center in honor of Stiller’s 9 year-old granddaughter, Carly, who was diagnosed with Type 1 Diabetes last year. Stiller says the diagnosis brought with it feelings of sadness and worry, knowing that Carly would have to deal with diabetes for the rest of her life. “As any parent or grandparent knows, it is frustrating to see a child or grandchild become ill and not be able to do anything about it. Having a fundraiser was an opportunity to at least try to do something to help Carly and other children with diabetes,” he said. The fundraiser took place every Friday in February at the Jacob Wirth Restaurant, located at 31-37 Stuart St. in the Theatre District. Guests were able to take part in a sing-a-long with Mel and were also given the chance to support the Joslin Diabetes Center - Pediatric, Adolescent and Young Adult Programs. Stiller raised $6,786 with this fundraiser and the money is going towards projects that are currently unbudgeted, including computers for the pediatric playroom and a possible research project or two, a gift of thanks for the care that Carly is receiving. The event was a great way to celebrate 25 years of sing-a-longs at Jacob Wirth and to give back to Joslin, an organization that is important to Stiller and his family. Mel continues to play every Friday night at the Jacob Wirth Restaurant in Boston.
Pictured (back row) Ashley Atkins, Micaela
Francis, Jen Griffin, (Front row) Emma and
Carly Stiller
Members from the Pediatric Unit went out
to support the fundraiser one Friday night
Debbie Butler, MSW, LICSW, CDE
Micaela Francis, MS, CCLS
Heidi Quinn, MS, RD, LDN
Ashley Atkins, MSN, RN, PNP
Jen Griffin, MS, CCLS
Alyne Ricker, MD — Medical Advisor
PAGE 6 N EWSL ETTER O F THE PE D IATR IC , AD O L ESC EN T AN D YO UN G AD UL T SEC TIO N PAGE 6
One Joslin Place, Boston, MA 02215 Pediatric, Adolescent and Young Adult Section: (617) 732-2603
Questions, comments, or suggestions? E-mail [email protected]
N EWSL ETTER O F THE PE D IATR IC , AD O L ESC EN T AN D YO UN G AD UL T SEC TIO N
Star Board!
*Strawberry-Orange Ice Pops — Makes 8
servings, Nutrients per serving: 20 kcal 5 g carb
Ingredients:
1 cup ripe strawber-
ries, (remove stems)
1 cup orange juice
Supplies:
Blender or food pro-
cessor
8 popsicle molds or (8 paper cups)
+ 8 wooden ice pop sticks small baking sheet
Instructions:
Put all ingredients into blender or food
processor, cover tightly, and blend until
smooth
Divide the mixture evenly among popsicle
molds or small paper cups; if using paper
cups put them on small baking sheet, cover
with plastic wrap, then poke wooden ice-pop
stick down through the wrap into the middle
of each cup.
Freeze until solid, about 4 hours.
Allajahne (12 years old) has been participating in competitive cheerleading for five years. Every year, the team participates in a community service project. This year they decided to collect teddy bears for Joslin’s annual Teddy Bear Clinic in honor of Allajahne who was diagnosed with diabetes five years ago. Additionally, this past March, Allajahne and her team traveled to Orlando, FL to compete in the UCA/UDA International All Star Championship. The girls competed against 12 teams from 6 different countries and came in first. Allajahne loves to cheer and she does not let diabetes stop her from doing what she loves. She is already looking forward to competing in next year’s UCA/UDA International All Star Championship.
Help the boat get to the buoy!
Question: I am trying to find a book that I can pass out to my daughter’s grandparents and other caregivers so that they can learn more about diabetes. Do you have any suggestions?
Answer: Yes, our team published a great book called, “Joslin's Guide to Managing Childhood Diabetes - A Family Teamwork Approach.” It is written for families, caregivers, and school staff who want to learn up-to-date information about caring for children with diabetes. If you would like to read more about it online or if
you would like to order a copy, you can go to Joslin store on the Joslin website and look in the “Kids and Teens” section. You can also go directly to the link on the Joslin website: https://www.joslin.org/jstore/
Q&A
Jen, Allajahne, and Micaela with donated teddy bears
