Celebrating Miracles & Milestones: Our Journey Continues

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CELEBRATINGMIRACLES & MILESTONES

OUR JOURNEYCONTINUES

2016 Monogenic Diabetes Family Forum

THURS, JUNE 23 - SAT, JUNE 25 Conference Guide



WELCOME to the University of Chicago Medicine Kovler Diabetes Center’s 2016 Monogenic Diabetes Family Forum, Celebrating Miracles and Milestones: Our Journey Continues.

This is a much-anticipated gathering of friends old and new. During our time together, you will have the opportunity to share your story, learn how to manage the challenges of monogenic diabetes and celebrate all of our community’s miracles and milestones.

We are confident that this event will be an amazing opportunity for you and your family. Together, we’ll inspire one another to look toward an even brighter future.

WELCOME

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Our SponsorsForum ActivitiesAgenda: Thursday, June 23Agenda: Friday, June 24Agenda: Saturday, June 25Faculty & PresentersAccommodations & VenuePhotography, Film & PublicityChild Care: Kamp KovlerNotesAddress Book

TABLE OF CONTENTS

CELEBRATING MIRACLES AND MILESTONES: OUR JOURNEY CONTINUES4

OUR SPONSORS

THANK YOU TO OUR SPONSORS FOR HELPING MAKE THIS DREAM A REALITY

Graeme BellCosmopolitan Club of AuroraColeen & Connor HuangNancy GoodAnni MachtCicely & Robert MichalakAndrew Parkinson

BREAKTHROUGH SPONSORS

PRESENTING SPONSOR

LAURIE & MICHAEL JAFFE

Peggy & ThomasHasenauer

Karen & JimReidEVE TYREE

ANGEL SPONSORS

Thomas ParkinsonMonique ParsonsLynn & Louis PhilipsonAmy PittanaroMichelle RagoLyn & John RamseyAdy & Harry Rosenberg

Rotering Family FundMarlene & Lee RubensteinWendy SerrinoJudith & Jeffrey SilvermanWalgreens

QUESTIONS? VISIT US AT THE KOVLER WELCOME DESK OR E-MAIL [email protected] 5

MAKE THE MOST OF YOUR CONFERENCE

In addition to scheduled conference events, families are also encouraged to participate in our other forum activities. All of the following activities are optional and complimentary with registration unless otherwise specified:

OPTIONAL FORUM ACTIVITIES

ACTIVITY HOURS

Thursday, June 23 12 - 5 p.m.

Friday, June 2412 - 5 p.m.

Saturday, June 25 9:30 a.m. - 12 p.m.

RESEARCH SESSIONS (By appointment only)Research opportunities will be available throughout the forum, including neurodevelopmental/behavioral assessments, mixed meal/protein tolerance tests, continuous glucose monitoring, and food/activity/sleep tracking. If you are interested in learning if you or your child is eligible to participate, please inquire at the Kovler Welcome Desk or email our research team at [email protected].

VIDEO STORY BOOTH (By appointment only)Since Kovler’s first monogenic family forum in 2010, families and individuals have had the opportunity to share their personal journey with monogenic diabetes on film at the forum. Don’t miss out on the chance to participate in this forum tradition! Make an appointment to share your story as our journey continues. A highlight reel of responses from all families will be compiled and shared with participants after the conference. Families can make their appointments via a sign-up form sent by e-mail in advance or during check-in at the Kovler Welcome Desk. See page 13 for details.

PORTRAIT SESSION (By appointment only)Capture lifetime memories with professional portraits by Hallie Duesenberg Photography on the beautiful grounds of the Hilton Oak Brook Hills Resort. Photos will be sent to families after the forum. Families can make their appointments via a sign-up form sent by e-mail in advance or during check-in at the Kovler Welcome Desk.

OTHER RESORT ACTIVITIES (Per resort policies)For your fitness and recreation, the Hilton Oak Brook Hills Resort provides basketball, fitness rooms, a golf course, and indoor and outdoor pools for all of its guests. However, please note that resort guests and forum attendees should supervise children directly in all swimming areas, including all indoor and outdoor pools. There is no lifeguard on duty. The University of Chicago staff, faculty and childcare providers will not be responsible for supervising children in these areas.

KOVLER WELCOME DESKQuestions? Please stop by the Kovler Welcome Desk if you have questions or concerns during the conference. The Kovler Welcome Desk is located in the east foyer of the conference center outside of Ballroom F. The Kovler Welcome Desk will be open for check in and questions during the following times:

Thursday, June 23 10 a.m. - 5 p.m.Friday, June 24 7:30 a.m. - 5 p.m.Saturday, June 25 8 a.m. - 12 p.m.

NOTE

If you need to reach someone outside of the Kovler Welcome Desk hours, please e-mail Peggy Hasenauer at [email protected].


AGENDA: THURSDAY, JUNE 23


Optional activities including research sessions, video story booth, portrait sessions and more are available throughout the day from 12 - 5 p.m.

Please see page 5 for details.

10:00 A.M. CONFERENCE CHECK-IN BEGINS (Kovler Welcome Desk at the east foyer of the conference center)

1:00 P.M. KAMP KOVLER CHECK-IN (OPTIONAL) (Medinah Room on the lower level) See page 18 for details.

1:30 P.M. WELCOME AND TEAM INTRODUCTION (Ballroom F) Louis H. Philipson, MD, PhD, FACP

1:45 P.M. WHERE ARE WE NOW? (Ballroom F) Siri Atma W. Greeley, MD, PhD Rochelle N. Naylor, MD Louis H. Philipson, MD, PhD, FACP

2:30 – 3:15 P.M. BREAKOUT SESSION #1 Attendees may attend one of two breakout sessions during this block:

(A) Medication Management / Sick Day Care (Ballroom G-H)Siri Atma W. Greeley, MD, PhDRochelle N. Naylor, MD

(B) Optimizing Developmental, Cognitive and Behavioral Supports for Educational Success: A Proactive Strategy (Ballroom F)Michael E. Msall, MDMegan Scott, PhD

3:20 – 4:05 P.M. BREAKOUT SESSION #2 Attendees may attend one of two breakout sessions during this block:

(A) Medication Management / Sick Day Care (Ballroom G-H)Siri Atma W. Greeley, MD, PhDRochelle N. Naylor, MD (B) Optimizing Developmental, Cognitive and Behavioral Supports for Educational Success: A Proactive Strategy (Ballroom F)Michael E. Msall, MDMegan Scott, PhD


4:15 – 5:30 P.M. JOURNEY TO A MIRACLE: FREEDOM FROM INSULIN (Ballroom F)

Documentary screening with introduction by Laurie Jaffe

5:45 P.M. KAMP KOVLER CLOSES (Medinah Room on the lower level)

6:00 – 8:00 P.M. WELCOME DINNER(Marquis Tent - take the stairs by Ballroom G to the lower level)

Join us in the big top as we welcome you to Celebrating Miracles and Milestones: The Greatest Show on Earth! Enjoy carnival games, face painters, jugglers, balloon animals and plenty of other surprises in this carnival-themed extravaganza. Our evening will end with a special performance from the world-famous, Chicago-based Jesse White Tumblers.

AGENDA: THURSDAY, JUNE 23


AGENDA: FRIDAY, JUNE 24

7:30 - 8:30 A.M. BREAKFAST BUFFET (Ballroom G-J) For all forum attendees, children, and families

8:30 A.M. KAMP KOVLER CHECK-IN (Medinah Room on the lower level) See page 18 for details.

9:00 A.M. OPENING REMARKS (Ballroom F) Louis H. Philipson, MD, PhD, FACP

9:15 A.M. THE STORY CONTINUES (Ballroom F) Graeme I. Bell, PhD

9:45 - 10:15 A.M. GENETICS (Ballroom F)Amy Knight Johnson, MS, CGCMay Sanyoura, PhD

10:15 - 10:30 A.M. BREAK

10:30 - 11:10 A.M. BREAKOUT SESSION #1 Attendees may attend one of three breakout sessions during this block:

(A) MODY Genes: GCK (Ballroom G)Rochelle N. Naylor, MD

(B) Neonatal Diabetes Genes: KCNJ11/ABCC8 (Ballroom F)Siri Atma W. Greeley, MD, PhD

(C) Sleep & Monogenic Diabetes (Ballroom H)Dorit Koren, MD

11:15 - 11:55 A.M. BREAKOUT SESSION #2Attendees may attend one of three breakout sessions during this block:

(A) MODY Genes: HNF1A / HNF4A (Ballroom G)Rochelle N. Naylor, MD (B) Neonatal Diabetes Genes: 6q24 (Ballroom F)Siri Atma W. Greeley, MD, PhD

(C) Sleep & Monogenic Diabetes (Ballroom H)Dorit Koren, MD


Optional activities including research sessions, video story booth, portrait sessions and more are available throughout the day from 12 - 5 p.m.





12:00 - 1:00 P.M. LUNCH BUFFET (Ballroom G-J)For all forum attendees, children, and families

1:00 - 1:15 P.M. KAMP KOVLER CHECK-IN (Medinah Room on the lower level)

1:15 - 2:05 P.M. BREAKOUT SESSION #3Attendees may attend one of three breakout sessions: during this block:

(A) Coping / Stress (Ballroom F)Edwin Cook, MDTina N. Drossos, PhD

(B) MODY Genes: GATA6 / PDX1 / INS (Ballroom H)Siri Atma W. Greeley, MD, PhD

(C) Tools & Technology (Ballroom G)Rochelle N. Naylor, MDLouis H. Philipson, MD, PhD, FACP

2:10 - 3:00 P.M. BREAKOUT SESSION #4Attendees may attend one of three breakout sessions during this block:

(A) Coping / Stress (Ballroom F)Edwin Cook, MDTina N. Drossos, PhD

(B) Accommodations / School issues / 504 plans / IEPs (Ballroom H)Amy Hess-Fischl, MS, RD, LDN, BC-ADM, CDEReshma Shah, MD

(C) Tools & Technology (Ballroom G)Rochelle N. Naylor, MDLouis H. Philipson, MD, PhD, FACP


3:05 - 3:55 P.M. BREAKOUT SESSION #5Attendees may attend one of two breakout sessions during this block:

(A) MODY Q&A (Ballroom G)Rochelle N. Naylor, MDLouis H. Philipson, MD, PhD, FACP

(B) Neonatal Q&A (Ballroom F)Siri Atma W. Greeley, MD, PhD


4:00 - 6:30 P.M WE’RE GOING TO THE ZOO - HOW ABOUT YOU?(Brookfield Zoo)Enjoy an afternoon at the Brookfield Zoo on your own before the Celebration Dinner. Complimentary entry and transportation to and from the zoo will be provided. Shuttle services from the Resort will run approximately every 15 minutes from 4:30 - 6 p.m.

6:30 - 9:30 P.M. CELEBRATION DINNER (The Discovery Center at the Brookfield Zoo)Celebrate Miracles and Milestones with a wild fiesta at the Brookfield Zoo. The evening includes concerts and a laser light show hosted by the Zoo. Trolley service back to the Hilton Oak Brook Hills Resort will be provided approximately every 15 minutes from 8 - 9:30 p.m.



8:00 - 10:00 A.M. BREAKFAST BUFFET (Ballroom F)

For all forum attendees, children, and families

8:30 - 9:30 A.M. CLOSING REMARKS AND FAREWELL (Ballroom F)Monogenic Diabetes Team

12:00 P.M. HOTEL ROOM CHECK-OUT

AGENDA: SATURDAY, JUNE 25


Optional activities including research sessions, video story booth, portrait sessions and more are available throughout the day from 9:30 a.m. - 12 p.m.



FACULTY & PRESENTERS

Graeme I. Bell, PhDKovler Family Distinguished Service Professor of Medicine and Human GeneticsDirector, Diabetes Research and Training Center The University of Chicago Medicine

Edwin Cook, MDProfessor of PsychiatryThe University of Illinois at Chicago

Tina N. Drossos, PhDAssociate Professor Psychiatry and Behavioral NeuroscienceThe University of Chicago Medicine

Daniela Del Gaudio, PhD, FACMGCo-Director, Molecular Diagnostic LaboratoryThe University of Chicago Medicine

Siri Atma W. Greeley, MD, PhDAssistant Professor of Pediatrics and MedicineSection of Adult and Pediatric Endocrinology, Diabetes and MetabolismKovler Diabetes CenterThe University of Chicago Medicine

Amy Hess-Fischl, MS, RD, LDN, BC-ADM, CDEProgram Coordinator, Teen TransitionsKovler Diabetes CenterThe University of Chicago Medicine

Laurie JaffeLeadership Board MemberKovler Diabetes CenterThe University of Chicago Medicine

Amy Knight Johnson, MS, CGCSenior Laboratory Genetic CounselorUniversity of Chicago MedicineGenetic Services Laboratory

Dorit Koren, MDAssistant Professor of Pediatrics and MedicineSection of Adult and Pediatric Endocrinology, Diabetes and MetabolismKovler Diabetes CenterThe University of Chicago Medicine

Michelle Lemelman, MDPediatric Endocrinology FellowKovler Diabetes CenterThe University of Chicago Medicine

Lisa Letourneau, MPH, RD, LDNResearch Study CoordinatorThe University of Chicago Medicine

Michael E. Msall, MDProfessor of Pediatrics; Section Chief Developmental and Behavioral PediatricsThe University of Chicago Medicine

Rochelle N. Naylor, MDAssistant Professor of Pediatrics and MedicineSection of Adult and Pediatric Endocrinology, Diabetes and MetabolismKovler Diabetes CenterThe University of Chicago Medicine

Louis H. Philipson, MD, PhD, FACPProfessor of Medicine and PediatricsSection of Adult and Pediatric Endocrinology, Diabetes and MetabolismDirector, Kovler Diabetes CenterThe University of Chicago Medicine

FACULTY / PRESENTERS


FACULTY & PRESENTERS

PLANNING COMMITTEE

May Sanyoura, PhDPost-doctoral ScholarKovler Diabetes CenterThe University of Chicago Medicine

Megan Scott, PhDAssistant Professor of PsychiatryThe University of Chicago Medicine

Reshma Shah, MDInstructor in Pediatrics Division of Developmental PediatricsThe University of Illinois at Chicago

Peter Smith, MD, MAAssociate Professor of PediatricsThe University of Chicago Medicine

Susan Tucker, MDPediatric Endocrinology FellowKovler Diabetes CenterThe University of Chicago Medicine

Flavius BecaGraeme I. Bell, PhDSean CampbellCarrie ChuiSoma Das, PhD, FACMGSiri Atma W. Greeley, MD, PhDPeggy Hasenauer, MS, RNCarla HenaultMichael and Laurie JaffeBrad Joutras, MBA, CFREMonica LanningLisa Letourneau, MPH, RD, LDNRachel LiebermanKatie LindauerJazzmyne MontgomeryRochelle Naylor, MDSoo-Young Park, PhDGladys PazLouis H. Philipson, MD, PhD, FACPHonggang Ye, PhD


ACCOMMODATIONS & VENUE

HOTEL ACCOMMODATIONS Hilton Oak Brook Hills Resort & Conference Center 3500 Midwest Rd, Oak Brook, IL 60523 Main Phone: (630) 850-5555 www.oakbrookhillsresortchicago.com

PARKING Complimentary on-site, outdoor parking is available through the Hilton Oak Brook Hills Resort.

Located just west of downtown Chicago and nestled into the serene surroundings of Oak Brook, Illinois, the Hilton Oak Brook Hills Resort offers an ideal destination for you and your family’s stay during the forum.

COMPLIMENTARY SHUTTLE SERVICE

Complimentary shuttle service to the surrounding area within a 5-mile radius is provided by the resort but is subject to availability. Arrangements with the resort should be made 24 hours in advance.

To make your shuttle arrangements, please call the Hilton Oak Brook Hills Resort at 630-850-5555.


MAP OF CONFERENCE CENTER


California Pizza Kitchen $$ - Pizza, Traditional American The Cheesecake Factory $$ - Traditional American, Desserts Maggiano’s Little Italy $$ - Italian Mon Ami Gabi $$ - French Seasons 52 $$ - American (New), Seafood, Wine Bar

9. Yorktown Center Dining www.www.yorktowncenter.com

The Yorktown Center Shopping Mall offers a variety of dining options, including, but not limited to, the following full-service restaurants:

Billy Goat Tavern $ - Burgers

Buca di Beppo $$ - Italian, Pizza

Flat Top Grill$$ - Vegetarian, Mongolian

Harry Caray’s Italian Steakhouse$$$ - Steakhouse, Italian, Wine Bar

Noodles & Company $ - Asian Fusion, Comfort Food

ACCOMMODATIONS & VENUE

AREA RESTAURANTS 1. Pappadeaux Seafood Kitchen $$ - Seafood - Pasquinelli Dr Festive chain for Cajun-style seafood 2. Uncle Bub’s BBQ & Catering $$ - Barbecue - N Cass Ave Kid-friendly, roadhouse-style BBQ pit 3. Vincitori $$ - Italian - N Cass Ave Cozy, rustic Italian trattoria & lounge 4. Yokohama Japanese Restaurant $$ - Japanese - E Burlington Ave Tranquil spot for sushi and bento boxes 5. Taco Grill & Salsa Bar $$ - Mexican - W Ogden Ave Modest taqueria with customizable grub 6. Shree Restaurant $$ - Indian - N Cass Ave Modest spot for vegetarian Indian fare 7. Citrus Diner $$ - Diner - E Ogden Ave Contemporary cafe with light eats 8. Oakbrook Center Dining www.oakbrookcenter.com

The OakBrook Center Shopping Mall offers a variety of dining options, including, but not limited to, the following full-service restaurants:

Antico Posto $$ - Italian, American (New)

OTHER NEARBY LOCATIONS Walgreens $$ - Convenience Store - E Ogden AvePrescriptions plus health & beauty items

Jewel-Osco $$ - Grocery Store - E Ogden Ave

MobilGas Station - E Ogden Ave

AREA ATTRACTIONS 1. Oakbrook Center

One of the most prestigious and striking outdoor shopping destinations in the Chicago area, the Oakbrook Center is an outdoor shopping mall carrying numerous major retailers, over 30 dining options, an AMC theatre, and anchors including Macy’s, Neiman Marcus, and Crate & Barrel.

2. Yorktown CenterA smaller, more leisurely alternative to the Oakbrook Center, the Yorktown Center is an premiere regional shopping mall with over 150 shops, 17 restaurants, Lucky Strike Lanes, an AMC Theater, and anchor stores including Von Maur, Carson Pirie Scott, and JCPenney.

COMPLIMENTARY SHUTTLE SERVICE

Complimentary shuttle service to the surrounding area within a 5-mile radius is provided by the resort but is subject to availability. Arrangements with the resort should be made 24 hours in advance.

To make your shuttle arrangements, please call the Hilton Oak Brook Hills Resort at 630-850-5555.


PHOTOGRAPHY, FILM & PUBLICITY

PHOTOGRAPHY AND FILM

We will have photographers present at the forum. We will only photograph you and your family with your consent. Release forms will be available upon event check-in at the Kovler Welcome Desk.

PUBLICITY

Newspaper, television, radio and other media representatives may be present and may wish to interview families about monogenic diabetes. Media release forms will be available upon event check-in at the Kovler Welcome Desk.


KAMP KOVLER

Children of all ages are welcome to attend the forum. If you would like to attend sessions without your children, kids may attend Kamp Kovler, the optional child care sessions that we provide at no additional cost. Kamp Kovler is a fun and educational experience with opportunities to learn origami, attend a fitness bootcamp, create artwork and more! Kamp Kovler activity schedules are posted online and in the forum. We are happy to take care of children who have diabetes as well as those who do not have diabetes.

KAMP KOVLER HOURS AND LOCATION

Kamp Kovler services will be offered in the Medinah Room on the lower level of the conference center on Thursday, June 23 from 1 – 5:45 p.m. and Friday, June 24 from 8:30 a.m. - 12 p.m. and 1 - 4:15 p.m. Parents are welcome to visit Kamp Kovler rooms throughout the day. Kamp Kovler will not be provided Thursday evening, Friday evening, or Saturday, but family-friendly activities will be offered (See page 5 for details).

Children must be signed in and out of these sessions by their parent or primary caregiver.

KAMP KOVLER TEAM

Kamp Kovler will be managed by our experienced team, including nurses, dietitians, child life specialists, certified diabetes educators and experienced volunteers. Supervision provided by our team will include play time, snack time and organized activities such as board games, coloring, reading, DVDs, etc. Children are also welcome to bring their own toys and personal favorites - these items or toys should be labeled properly. Please note that child care services will NOT include activities or supervision around the indoor and outdoor pool areas. Families are responsible for supervising their children at these areas per hotel policies.

For all Kovler Kamp sessions, the childgiver to child ratios will be 1:1 for children <1 year, 1:2 for children aged 1-2 years, 1:3 for 3-7 years and 1:5 for those >7 years.

IMPORTANT!

In order for kids to participate in Kamp Kovler, families will need to complete a child care consent form. The child care consent form is available upon check-in at the Kovler Welcome Desk.


KAMP KOVLER POLICIES

Before checking your child into Kamp Kovler, please make sure to familiarize yourself with our following child care guidelines:

Have questions about Kamp Kovler?

If you have any questions regarding Kamp Kovler, please contact Jennifer Kemp Berchtold, Director of Child Care at [email protected].

COMMUNICATIONEach child will need to be signed in and out of these sessions by their parent or primary caregiver. Additionally, if parents or primary caregivers are leaving the Hilton Oak Brook Hills Resort building during the forum for any reason during Kamp Kovler hours, please notify Kamp Kovler staff prior to leaving the resort to verify contact information.

RESEARCH With your consent, Kamp Kovler staff may help to escort your child to and from their research sessions.

MEALS AND SNACKSWe encourage all parents to eat breakfast and lunch with their children on Thursday and Friday in the main forum space. Gluten-free, low-fat, healthy snacks will be offered to children in the child care room mid-morning and mid-afternoon unless you specify that your child is to have only their own snacks. (A list of exact meal and snack items will be provided to families upon request). We ask that all children with a food allergy wear a special bracelet to identify them.

CHECKING BLOOD SUGARSKamp Kovler staff will ONLY check blood sugars or administer medications on an emergency basis. In all other cases, parents should bring all necessary medications and supplies to the forum and administer blood sugar checks and/or all medications to children directly.

BATHROOMKamp Kovler staff will contact parents for diaper changes as needed, as this is a service we will not be providing. If staff members have your permission to escort your child to the bathroom, please say so during Kamp Kovler check-in.

PERSONAL ITEMSPlease ensure that all personal toys, books and games are clearly labeled with the child’s name and family name.

KAMP KOVLER

MEET OUR KOVLER KAMP EXPERTS

Jennifer Kemp Berchtold M.S., CCLS, DT, CPST

Jennifer Kemp Berchtold is back as the Director of Kamp Kovler after serving as Director in 2010 and 2013. Jenny is an experienced Child Life Specialist, Developmental Therapist, and teacher of all ages. She works at her alma mater, Erikson Institute, as adjunct faculty and the program manager for all of the Infant Studies certificate programs. Jenny helps recruit and prepare the next generation of providers for some of life’s most important work — that of working with children.

Elizabeth Noreen

Elizabeth Noreen was a Kamp Kovler volunteer in 2013 and is Assistant Director of Kamp Kovler this summer. Elizabeth just completed her graduate studies in child development with a focus in Child Life and supporting children with medical and developmental differences at Erikson Institute in Chicago.


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CONNECT WITH OTHERS

Met individuals who made your conference memorable? Use the following space to record the contact information of those you would like to stay in touch with post-conference!

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CONNECT WITH KOVLER

FACEBOOKkovler.diabetes.center

TWITTER@KovlerDiabetes

WEBSITESwww.kovlerdiabetescenter.orgwww.monogenicdiabetes.org

E-NEWSLETTERSign up for our monthly e-newsletter! Text “KOVLERDIABETES” to 22828 to get started.

QUESTIONS?e: [email protected]: 773.834.4789

MAIL900 E 57th St, 8th FloorChicago, IL 60637





AT THE FOREFRONT OF DIABETES CARE AND DISCOVERYSM

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Celebrating Miracles & Milestones: Our Journey Continues