2014 jdrf type one now conference program

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It takes a community to turn Type One into Type None

Welcome to the TypeOneNation educational conference June 21, 2014 | Austin Convention Center | Austin, TX

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Together, we will turn type one into

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ht til there’s a cure” “fig

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Dr. Tom Blevins

Table of Contents

Welcome Letter . . . . . . . . . . . . . . 3 Help us create a world without type 1 diabetes | jdrf.org

State of JDRF . . . . . . . . . . . . . . . . 4 Poetry Winner . . . . . . . . . . . . . . . 5 Keynote Address . . . . . . . . . . . . . 6

Sponsor Thank You

Core Programs Sessions & Speakers . . . . . . . . . . . . . . . . . . . . 7 Core Sessions Descriptions . . . 8 Child Track . . . . . . . . . . . . . . . . . 12 Alternative Caregiver Training . . . . . . . . . . . . . . . . . . . . 13 Exhibit Floor Maps . . . . . . . . . . 16

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Dana Roseman

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Emma Garrett

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Hello and welcome to JDRF’s TypeOneNation Texas 2014. Today is a big day! I am honored to be part of creating this summit as a day of inspiration and education for everyone affected by T1D. It has been one of the most meaningful things I have done. If you are affected by T1D, you know how frustrating and potentially dangerous it is. My husband and I nearly lost our daughter when her T1D was initially misdiagnosed just before her first birthday. Without today’s technological advances available to us, he and I had to rely on finger sticks to check her blood sugar throughout the night to make sure she would wake up in the morning. Managing diabetes can be difficult even on the best days. We have worked hard to learn as much as we can about today’s treatments and research. We connected with the people and resources of JDRF, and have been part of JDRF’s mission to turn type one into type none. Today, you have a great opportunity at TypeOneNation Texas to learn about treatments and research available today and on the horizon for tomorrow. We are so lucky to have Dr. Richard Insel, the Chief Scientific Advisor for JDRF, sharing the State of JDRF and giving research updates. There is no greater source of insight than Dr. Insel. We have great speakers and exhibitors who have a wealth of knowledge and wisdom to share about living well with T1D now. You also have the opportunity to connect with others. Learn and be inspired by what you hear today. Share your wisdom with others. Take the time to visit with new friends. If you came with someone, divide and conquer. There is something here for everyone. When you return home, be a part of JDRF’s mission to cure, better treat, and prevent T1D. Every day, JDRF staff and volunteers all over the world actively work to turn type one into type none. We would love to have your support as a volunteer, advocate, and donor. Walk is right around the corner. We can all be a part of JDRF and create a world where type one is type none. Thank you,

Emma Garrett Chair, TypeOneNation Texas 2014

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thing ” get in my way

Nicole Bereolos

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blem , do it” n’t talk about

Gary Scheiner

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3


state of jdrf

Notes

Richard A. Insel, M.D.— 11:00 a.m Ballroom A Dick Insel speaks frankly and openly about JDRF research —how far we’ve come and what’s on the horizon in the near, mid and long term future. Dr. Insel addresses the status of such promising and critical advancements in the fields of encapsulation, the artificial pancreas and prevention and what it will take to bring research projects in the works today to market tomorrow.

Richard A. Insel, M.D., is the chief scientific officer for JDRF, where he has responsibility for heading up the strategic direction and oversight of all JDRF research projects. Dr. Insel has had a distinguished medical and research career in pediatric immunology. Prior to joining JDRF in 2003, he held various leadership positions at the University of Rochester Medical Center during a 26year tenure there. Dr. Insel was the founding director of the Center for Human Genetics and Molecular Pediatric Disease and a member of the departments of pediatrics and microbiology & immunology. Among other responsibilities, Dr. Insel served as acting chair of pediatrics; professor of pediatrics, microbiology & immunology, and the Cancer Center; associate chair for pediatric research; director of the Strong Children’s Research Center; and chief of the Division of Pediatric Immunology, Allergy and Rheumatology. Dr. Insel was the scientific co-founder of Praxis Biologics, a biotechnology company established in 1983 and subsequently acquired by Wyeth, the global pharmaceutical and health care products company. Praxis Biologics was responsible for bringing a new vaccine to market that resulted in the virtual elimination of the most common form of childhood meningitis among American infants and children. Dr. Insel has served on the National Advisory Allergy and Infectious Diseases Council of the National Institutes of Health. He has been a visiting associate professor of biochemistry and biophysics at Columbia University’s College of Physicians and Surgeons, a fellow in pediatrics (research) at Harvard Medical School, and a fellow in medicine (immunology) at Children’s Hospital Medical Center in Boston. He also served in the Laboratory of Parasitic Immunochemistry at the Centers for Disease Control and Prevention in Atlanta.

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What Is Invisible

by Lindsey Tomlin, age 14 We are always the odd ones out, the ones the heads crane to just to get a glimpse of our pain grimacing as they do so.

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y illness won’t stop me” “m

type

Lindsey Tomlin

Notes

Our beeping devices attached to our bodies shrill noises causing yet another set of repugnant looks to come our way Looked upon as disabled to the outsiders— we can’t do this we can’t eat that It’s a race staying ahead, thinking ahead, jumping over the hurdles and missing the mark. Sometimes we and all of our teammates are out of breath and can’t keep up. It’s like a child trying desperately to color inside the linesso easy to bystanders yet proves so difficult. Put us together, shrill beeps, bruises, tubing, finger “freckles” and all, we will finish a plethora of races you could never aspire to complete and overcome our greatest of hurdles. 5


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keynote address

Nicole Johnson, DrPH, MPH, MA

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diabetes”

Nicole Johnson

Nicole Johnson shares her personal story of living well with T1D—the challenges of diagnosis and the power of her personal inspiration, motivation and inner strength to become Miss American and the successful mentor, mother and business woman she is today. Nicole has served as an international consultant and advocate for diabetes issues for more than 12 years. She has worked tirelessly promoting awareness, prevention, and early detection of the condition she has shared since 1993. Nicole is a Telly award-winning television journalist and an avid writer. Her articles on living with diabetes have appeared in Diabetic Cooking Magazine, Guideposts Magazine, Diabetes Forecast, Diabetes Health, USA Today and on various websites related to diabetes. She has written six books including her most recent diabetes cookbook, Nicole Johnson’s Diabetes Recipe Makeovers and her autobiography, Living with Diabetes. Over the last 12 years, Nicole has helped raise over $26 million for diabetes research and programs. She is passionate about promoting public participation and understanding of research. Nicole has been recognized for her work in diabetes around the world.

exhibitors

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Core Programs—Sessions & Speakers 10:00-11:00am

Check-In & Time with Exhibitors

11:00am-Noon

Opening & State of JDRF with Dr. Insel—Ballroom A

Noon -1:00pm

Lunch & Time with Exhibitors—Ballroom A

Session 1 1:00-1:50pm Passing 1:50-2:00 pm

Session 2

2:00-2:50pm

2:50-3:30pm

Session 3 3:30-4:20pm Passing 4:20-4:30pm

Session 4

4:30-5:20pm Parents pick up children from Child Track at 5:30pm

6:00pm

Newly Diagnosed Welcome & Meet Up—RM 4ABC

S

S

B

A

R

Social & Emotional

Social & Emotional

Basic Care

Advanced Care

Research

A Type One Diabetes Guide to the Universe with Joe Solowiejczyk

Stress & Resilience with Marisa Hilliard

All about your numbers— what information do you need & how you use it

Pathway to a Cure with Dr. Insel

with Dr. Blevins

Making the Most of Continuous Glucose Monitoring with Gary Scheiner

Room: 9C

Room: 9AB

Room: 8ABC

Room: 4ABC

Room: 6AB

Social & Emotional

Social & Emotional

Basic Care

Advanced Care

Research

Musings with Kerri Sparling

From Diagnosis to Empty Nest with Moira McCarthy

Getting the Most from your Pump & CGM with Dana Roseman

Putting it ALL Together with Dr. Ponder

Encapsulation with Dr. Insel

Room: 9AB

Room: 8ABC

Room: 4ABC

Room: 9C

Room: 6AB

Adult T1D & Partner

Adult T1D & Partner

Parent & Grandparent

Parent & Grandparent

Coffee and Snack Break with Exhibitors (Parent bolus for child’s snack in child area)

S

S

B

A

R

Social & Emotional

Social & Emotional

Basic Care

Advanced Care

Research

Couples Discussion with Kate Gose Naylor

A Type One Diabetes Guide to the Universe with Joe Solowiejczyk

Carbs & Glycemic Load with Jennifer Smith

Managing Blood Glucose during Exercise with Gary Scheiner

Artificial Pancreas Update

Room: 4ABC

Room: 9AB

Room: 8ABC

Room: 6AB

Room: 9C

S

S

B

A

R

Social & Emotional

Social & Emotional

Basic Care

Advanced Care

Research

Pregnancy; Parenting; & TID with Nicole Johnson

Success at School with Cassie Moffitt & Nicole Bereolos Room: 6B

Carb Counting & Meal Planning with Jennifer Smith

Prevention with Dr. Insel

Room: 9A

Communicating with your Health Care Team & Advocating for what you need with Kerri Sparling Room: 8C

Basic Pumping with Dr. Rayas

Trials & Triumphs: A Real Teen Life

Room: 8A

Room: 8B

Adult T1D & Partner

Adult T1D & Partner

Room: 4BC

Until There is a Cure with Gary Scheiner

Room: 4A

5:30-6:00pm

10:30-11:00am

Parent & Grandparent

Parent & Grandparent

– SAdolescence

Sponsored by Medtronic

Room: 9C

and Letting Go with Moira McCarthy Room: 9B

Grandparent Discussion with Jay Rosenfeld Room: 10A

Happy Hour Mixer—Ballroom A—Time with Exhibitors Dinner—Keynote Address with Nicole Johnson—Ballroom A 7


Core Session Descriptions Session 1: 1:00–1:50pm Social & Emotional Adult T1D & Partner

S

Room: 9C A Type One Diabetes Guide to the Universe Speaker: Joe Solowiejczyk, RN, MSW, CDE When one of you has it, both of you live with it! Join Joe to talk about intimacy, boundaries, and making it work for both partners.

Social & Emotional Parent & Grandparent

S

Room: 9AB Stress and Resilience in Family Diabetes Management Speaker: Marisa Hilliard, Ph.D. Learn strategies to manage the many challenges that come when raising children with T1D and walk away with tools to promote resilience, achieving good diabetes management, and empowering yourself and your children.

Basic Care

B

Room: 8ABC All About Your Numbers—What Information Do You Need and How Do You Use It Speaker: Thomas Blevins, MD, ECNU, FACE, FNLA Diabetes is a numbers game and blood glucose and hBA1C are just the beginning. Learn what tests every person with T1D should get regularly, how to interpret those test results, and ultimately what measures to take to improve your numbers and maximize your health.

Advanced Care

A

Room: 4ABC Making the Most of Your Continuous Glucose Monitor Speaker: Gary Scheiner, MS, CDE Continuous glucose monitoring represents the next major step in intensive diabetes management, yet many users are challenged when it comes to making effective use of CGM technology. Learn the practical aspects of CGM: overcoming their shortcomings, using CGM data in real-time, and analyzing CGM reports in order to improve one’s daily self-management.

Research

R

Room: 6AB Pathway to a Cure Speaker: Richard Insel, M.D. Dr. Richard Insel leads JDRF research as the Chief Scientific Officer. He oversees the strategic direction and oversight of all JDRF research projects. JDRF led research focuses on curing, better treating, and preventing T1D. Learn how all the pieces fit together into JDRF’s plan to turn type one into type none.

Session 2: 2:00-2:50pm Social and Emotional Adult T1D & Partner

S

Room: 9AB Musings with Kerri Sparling Speaker: Kerri Sparling Kerri Sparling, author of the blog Six Until Me and best-selling book Balancing Diabetes: Conversations about finding happiness and living well leads an enlightening discussion about happiness, balance, and living well.

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Dr. Ponder

Kerri Sparling

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Social and Emotional Parent & Grandparent

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Room: 8ABC A Parent’s Journey: From Diagnosis to Empty Nest Speaker: Moira McCarthy Join Moira McCarthy, mother to a 22 year old with T1D and author of the best-selling book, The Everything Parent’s Guide to Diabetes and Raising Teens with Diabetes: A Parent Survival Guide, as she discusses a parent’s journey through multiple life transitions. Moira will address transitions during the elementary school years through the teen years and into college. Finally, Moira will address the issue of letting go as your child grows up.

Basic Care

B

Room: 4ABC Getting the Most from Your Pump and CGM Speaker: Dana Roseman MPH, CDE, RD, LD Listen to long time pumper and diabetes expert, Dana Roseman share how to get the most from your insulin pump and continuous glucose monitor.

Advanced Care

A

Room: 9C Putting it ALL Together Speaker: Stephen Ponder MD, FAAP, CDE Understanding how food, hormones, activity levels, and today’s insulins interact and affect blood sugar levels is fundamental to maximizing blood sugar control. Come hear Dr. Ponder share insightful tips on how to get the most out of today’s tools by putting it all together.

Research

R

Room 6AB Encapsulation Speaker: Richard Insel, M.D. Listen to Dr. Insel explain how encapsulated cell therapy has the potential to virtually eliminate the relentless daily management burden for those living with T1D without the need for immunosuppressants. Hear updates about JDRF’s Encapsulation Consortium and research strategy.

Session 3: 3:30-4:20pm Social and Emotional Adult T1D & Partners

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Room: 4ABC Couples Discussion Speaker: Kate Gose Naylor LMFT—Associate This special session is for spouses and partners of those living with T1D to discuss self-care, partner-care, and most of all, marriage care in a supportive environment facilitated by marriage and family therapist Kate Gose Naylor.

Social and Emotional Parent & Grandparent

S

Room: 9AB A Type One Diabetes Guide to the Universe for Parents and Grandparents Speaker: Joe Solowiejczyk, RN, MSW, CDE Joe will discuss in a fun and entertaining way how families can communicate and cope more effectively. Most importantly Joe shares how to have diabetes and have a life.

Basic Care

B

Room: 8ABC Carbs and Glycemic Load Speaker: Jennifer Smith, RD, LD, CDE An in depth look at what carbohydrates are and where you find them. Jennifer will focus on practical application of the glycemic index and glycemic load to enable you understand how and why blood glucose may be effected differently based on food choices. 9


Advanced Care

A

Room: 6AB Managing Blood Glucose during Exercise Speaker: Gary Scheiner, MS, CDE People with T1D of all ages can (and should) participate in a variety of sports and fitness activities. This session focuses on the management of glucose levels during all forms of exercise—from competitive sports to short and long-duration exercise.

Research

R

Room: 9C Artificial Pancreas Update from Medtronic Speaker: Lane Desborough Lane Desborough is the Product Strategist for the Diabetes business unit of Medtronic and also a dad to a son with T1D. Lane will share his knowledge and expertise of Medtronic’s closed loop artificial pancreas systems and his experiences as dad whose son participates in Medtronic’s artificial pancreas trials. A working closed-loop system that manages blood sugar will revolutionize diabetes management and make living with diabetes easier and safer. Lane is at the forefront of Medtronic’s efforts to bring an artificial pancreas to those with T1D.

Session 4: 4:30-5:20pm Social and Emotional Adult T1D & Partner

S

Room: 4BC Pregnancy, Parenting, and T1D Speaker: Nicole Johnson If you are a woman living with T1D, then you will want to meet Nicole Johnson. Nicole shares her story of pregnancy, parenting, and T1D.

Social and Emotional Adult T1D & Partner

S

Room: 4A Until There’s A Cure Speaker: Gary Scheiner, MS, CDE Take an enlightening and entertaining journey through the evolution of diabetes management over the past several decades. Discover where we’ve come from and where we’re headed, with an emphasis on what’s available here and now.

Social and Emotional Parent & Grandparent

S

Room: 10A Grandparent’s Discussion with Jay Rosenfeld Speaker: Jay Rosenfeld After a grandchild’s T1D diagnosis, grandparents find themselves in a changed world. Grandparents are coping with a grandchild’s illness, adult children’s needs, and a grandparent’s own emotions. Join Jay Rosenfeld in a discussion designed to provide grandparents with tools to better support and care for families and their own needs.

Social and Emotional Parent & Grandparent

S

Room: 6B Success at School Speakers: Cassie Moffitt, RN, CDE and Nicole Bereolos, Ph.D., MPH, CDE Every parent and grandparent with a child with T1D wants their child to succeed at school at any grade level. Succeeding at school is about academics, being safe, and having emotional needs met. Cassie and Nicole both have T1D and both have unique insight into how you can better help your child succeed at school at any grade.

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Jay Rosenfeld

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Joe Solowiejczyk

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Social and Emotional Parent & Grandparent

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Room: 9B Adolescence and Letting Go Speaker: Moira McCarthy Join Moira McCarthy, mother to a 22 year old with T1D and author of the best-selling book, The Everything Parent’s Guide to Diabetes and Raising Teens with Diabetes: A Parent Survival Guide, as she discusses adolescence, letting go, and T1D. Learn how to manage adolescence and the life transitions it brings. Gain insight into how to talk with your children and how to begin making sense of the additional diabetes challenges that may occur during these times. Finally, Moira will address the issue of letting go, and giving your young adult some space to flourish and feel independent.

Basic Care

B

Room: 9A Carb Counting and Meal Planning—Carb Centric Speaker: Jennifer Smith, RD, LD, CDE Carb counting tips and tricks—a look at how to use typical tools as well as practical guess-timation guides to enable more precise counting. Jennifer will discuss carbohydrates, with an in depth look at why balance is important and why we shouldn’t be focused solely on carbohydrates when meal planning. We’ll discuss how to plan balanced, healthy meals for optimal health at all ages - with ideas for easy quick meals.

Basic Care

B

Room: 8A Basic Pumping Speaker: Maria “Sukie” Rayas, MD If you are thinking about starting insulin pump therapy or have recently started using an insulin pump, Dr. Rayas will share a wealth of information for a successful start. Dr. Rayas will discuss using basal rates, boluses, and correction factors when pumping. She will also discuss solutions to prevent common problems associated with starting insulin pump therapy.

Advanced Care

A

Room: 8C Communicating with your Health Care Team and Advocating for What You Need Speaker Kerri Sparling If you follow Kerri on her blog or Twitter, you know that Kerri is an expert at finding creative safe solutions to diabetes related problems. She takes what she learns and successfully communicates with her health care team to get what she needs. Learn tips from Kerri and leave feeling inspired and empowered to get what you need in a constructive way.

Advanced Care

A

Room: 8B Trials and Triumphs: A Real Teen Life Speakers: Anna DesOrmeaux, Ben Fuller, Emily Zipp This meet-up and presentation is for teens to have fun and learn from young adults living with T1D. Teens will not want to miss this special session just for them and will receive a goodie bag.

Research

R

Room: 9C Prevention Speaker: Richard Insel, MD Prevention of T1D represents a “cure” for those at risk for developing the disease. JDRF is investing in research to prevent those most susceptible from developing T1D. Dr. Richard Insel will share JDRF’s strategy for preventing T1D and share the latest research.

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Kate Gose Naylor

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I’m thes o year “30

f dia s” bete s succes

Cassie Moffitt

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child track schedule 10:00-11:00am

Child Track Check-In—Room 1 (12-13 yrs.), Room 2 (9-11 yrs.), Room 3 (5-8 yrs.), Room 5C (Under 5 yrs.) Celebrity Guest Characters greeting, Despicable Me movie, Pre-icebreaker puzzle craft

11:00am-Noon

Welcome and Run Down of the Day Ice Breakers—(in assigned rooms)

Noon -1:00pm

Parents pick up children for lunch and time with exhibitors from assigned rooms. Check back in to Child Track: 12:40-12:55pm Room 1 (12-13 yrs.), Room 2 (9-11 yrs.), Room 3 (5-8 yrs.), Room 5C (Under 5 yrs.). Games and crafts

Session 1 1:00-1:50pm (1:50-2:00pm Bathroom break)

5-8 year olds Art Therapy Project with Jennifer Smith, RD, LD, CDE

Meeting Room 3

9-13 year olds Kids on the Block Puppet Show with Jennifer Smith, RD, LD, CDE

Ballroom A

5-8 year olds Kids on the Block Puppet Show

Ballroom A

9-11 year olds Art Therapy Project (Loom bracelets/KnotShots) with Anna Gould

Meeting Room 2

12-13 year olds A Diabetes Guide to the Universe with Joe Solowiejczyk, RN, MSW, CDE

Meeting Room 1

Session 2

2:00-2:50pm

2:50-3:30pm

Session 3 3:30-4:30pm

Session 4

4:30-5:15pm

5:15-5:30pm

Snack Time—Parents to check blood sugar and bolus for children’s snacks in assigned rooms. Room 1 (12-13 yrs.), Room 2 (9-11 yrs), Room 3 (5-8 yrs), Room 5C (Under 5 yrs). Movie/arts & crafts/games

Hello from Dr. Richard Insel Drum Café—Interactive Drumming Performance

Ballroom A

5-8 year olds Speakers Berkeley Barnett and Marisa Hilliard Ph.D.

Meeting Room 3

9-11 year olds Speakers Marisa Hilliard Ph.D. and Berkeley Barnett

Meeting Room 2

12-13 year olds Art Therapy Project (Loom bracelets/KnotShots) with Anna Gould

Meeting Room 1

Despicable Me movie/Games/Activities *Parents pick up children at 5:30pm in assigned rooms: Room 1 (12-13 yrs.), Room 2 (9-11 yrs.), Room 3 (5-8 yrs.), Room 5C (Under 5 yrs.).

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lculated risk” a c “

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Ben Fuller

12

I’m theay ver s e n “

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Emily Zipp

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alternative caregiver training 10:00-11:00am

Check-in & Time with Exhibitors

11:00am-Noon

Opening & State of JDRF with Dr. Insel

Room: Ballroom A

Noon -1:00pm

Lunch & Time with Exhibitors

Room: Ballroom A

Session 1

Alternate Caregiver Training

Room: 10A

1:00-2:50pm Coffee & Snack Break, Time with Exhibitors

2:50-3:30pm

Session 2

Alternate Caregiver Training

Room: 10A

Grandparent Discussion with Jay Rosenfeld

Room: 10A

Until There Is a Cure with Gary Scheiner

Room: 4A

Prevention with Dr. Insel

Room: 9C

Carb Counting and Meal Planning with Jennifer Smith

Room: 9A

Basic Pumping with Dr. Rayas

Room: 8A

3:30-4:20pm

Passing & Break

4:20-4:30pm

Breakout Sessions

4:30-5:20pm

5:30-6:00pm

Happy Hour Mixer—Ballroom A—Time with Exhibitors

6:00-8:00pm

Dinner—Keynote Address with Nicole Johnson—Ballroom A

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Jennifer Smith

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Anna DesOrmeaux 13


Tandem Diabetes Care is proud to support JDRF, and to be working together in the development of novel technologies to help improve the lives of people with diabetes.

Proud to support JDRF’s vision to end diabetes.

www.tandemdiabetes.com

© 2014 Tandem Diabetes Care, Inc. All rights reserved. t:slim and Tandem Diabetes Care are registered trademarks of Tandem Diabetes Care, Inc. U.S. and international Patents Pending. The t:slim Insulin Pump is intended for the subcutaneous delivery of insulin, at set and variable rates, for the management of diabetes mellitus in persons requiring insulin, for individuals 12 years of age and greater. ML-000183_A

SpeciallyForChildren.com

Notes

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t e well oday” v i l “

Dr. Marisa Hilliard

14

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I’m the n “ha

ds & feet until

” there is a cure

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Nelda Rodriguez-Caceras


Notes

Fifty 50’s Promise to You... FIFTY 50 carries all the diabetes supplies you need, and we donate 50% of our profits to diabetes research – that’s why we’re called FIFTY 50. By getting your supplies from FIFTY 50, you are helping to raise funds for diabetes research without paying any extra. So far FIFTY 50 has donated nearly $12 Million to diabetes research, and $405,000 to JDRF this year alone. We support JDRF’s goal of turning Type 1 into Type None! Our promise is to continue to donate to research until the day a cure is found for diabetes because, like you, we believe more funding for research means finding a cure sooner for our loved ones. To find out how to enroll in FIFTY 50, please call 800-746-7505.

www.fifty50pharmacy.com

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GROUND FLOOR

Ballroom A for opening lunch and closing dinner

Child Track Check in located outside Room 3

Child Track located in Rooms 1, 2, 3

ENTRANCE

M A P S LEVEL 3 Exhibitor Hall is located in the hallways from Rotunda to Palazzo and from Palazzo to 10AB Rooms 4ABC, 6AB, 8ABC, 9AB, & 9C are the Core Program Breakout Session locations

4ABC Newly Diagnosed Welcome & Meet Up

5C Child Care for Kids Under 5 10A Alternative Caregiver Training


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