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22q and You:
A Meeting for Caregivers
July 1 and 2, 2015
Leonard and Madlyn Abramson Pediatric Research Center
at The Children’s Hospital of Philadelphia
www.chop.edu/cme
Course Information
Overview
The 22q and You Center at The Children’s Hospital of Philadelphia will be hosting a very special two-day
conference for parents, grandparents and caregivers of children with chromosome 22q11.2 deletions or
duplications, as well as, adults with these chromosomal differences. Designed to provide information
on associated medical conditions, as well as, speech, language, learning and behavioral differences with
particular emphasis on management strategies, presentations will be provided by world leaders while
conveniently held on the campus of The Children’s Hospital of Philadelphia just prior to Dragonfly Forest
Camp and concurrent to Philadelphia’s internationally acclaimed Welcome America July 4th Celebration!
Hotel Accommodations
In light of Philadelphia’s annual Welcome America! July 4th citywide celebration, we encourage you to
make your hotel reservations as soon as possible. Below are a few hotels located close to the Hospital.
Hilton Inn at Penn
(meeting headquarter hotel)
3600 Sansom St. • Philadelphia, Pa. 19104
215-222-0200 • www.theinnatpenn.com
Sheraton Philadelphia University City Hotel
3549 Chestnut St. • Philadelphia, Pa. 19104
215-387-8000 • www.philadelphiasheraton.com
Homewood Suites by Hilton
4109 Walnut St. • Philadelphia, Pa. 19104
215-382-1111 • http://homewoodsuites.hilton.com/en/hw/groups/personalized/P/PHLUPHWIBB-20150628/index.jhtml
A block of rooms has been reserved at reduced rates. The group rate is $199 plus tax. Please mention
CHOP IBBC/22q when making your reservations. The special room rate is available until May 28, 2015.
Registration Information
Attendees can register by mail, fax or online. Please see the registration form for the address, fax and Web
address. Pre-registration is required. Payment must accompany the registration form for it to be processed.
Once registration has been processed, a confirmation letter will be mailed. If you have any questions about
this conference, please call 215-590-5263.
Cancellation and Refund Policy
The Children’s Hospital of Philadelphia reserves the right to cancel or postpone any conference due to
any unforeseen circumstances. In the event of cancellation or postponement, The Children’s Hospital of
Philadelphia will refund registration fees but is not responsible for any related costs, charges or expenses
to participants, including cancellations/charges assessed by hotels, airlines or travel agencies. In order to
process refunds, cancellations must be received in writing by Friday, June 19, 2015. Refunds will be issued
for the amount of registration minus a $25 administrative fee. No refunds will be issued thereafter.
Services for People with Disabilities
Participation by all individuals is encouraged. If arrangements are required for an individual with special
needs to attend this meeting, please contact the CME Department at 215-590-5263 at least two weeks in
advance so that we can provide better service to you during the conference.
Important Reminder to All Parents
We hope you will understand that children are not permitted to attend the conference, as this is a full
two-day educational conference. We regret that we are unable to provide childcare services during the
conference and ask that you make arrangements for your children to be cared for at home or elsewhere.
Thank you in advance for your cooperation.
Preliminary Program: Wednesday, July 1, 2015
8 a.m. Registration Opens
8:30 a.m. Welcome and Introductions – Elaine H. Zackai, M.D.
8:45 a.m. Setting the Stage – What are 22q11.2 Deletions and Duplications? How Does a
Deletion or Duplication Happen? What is the Chance That a Deletion or Duplication
will Happen Again? – Donna M. McDonald-McGinn, M.S., L.C.G.C.
MEDICAL ASSOCIATIONS
9:30 a.m. The Heart – Elizabeth Goldmuntz, M.D.
10 a.m. The Immune System: Infections, Allergies, Autoimmune Problems and Malignancies –
Kathleen Sullivan, M.D., Ph.D.
10:30 a.m. Coffee Break
11 a.m. The Palate and Speech – Oksana Jackson, M.D.
11:30 a.m. Ear, Nose and Throat – Steven Handler, M.D., M.B.E.
11:45 a.m. Calcium, Thyroid and Growth – Vaneeta Bamba, M.D.
12:15 a.m. Bones – David Spiegel, M.D.
12:30 p.m. Lunch
1:30 p.m. Feeding, Swallowing and Stooling – Maria Mascarenhas, M.B.B.S.; Peggy Eicher, M.D.
2 p.m. Blood – Michele Lambert, M.D.
2:20 p.m. Kidneys and Genitourinary Tract – Thomas Kolon, M.D.
2:40 p.m. Sleep – Alex Mason, M.D., Ph.D., M.S.C.E.; Margaret Souders, R.N., M.S.N., Ph.D.
3 p.m.Afternoon Tea
3:30 p.m. Comprehensive Coordinated Care – Meg Maguire, R.N., M.S.N., C.R.N.P., C.P.N.P.
3:45 p.m. International Pediatric and Adult Healthcare Guidelines – Anne Bassett, M.D.; Donna M.
McDonald-McGinn, M.S., L.C.G.C.
FAMILY VOICES
4 p.m. A Report from Down Under – Maria Kamper, Australia
4:15 p.m. When Irish Eyes Are Smiling – Anne Lawlor, Ireland
4:30 p.m. From Max with Love – Julie Wootton, England
4:45 p.m. My Heart Outside My Chest – Sheila Kambin, U.S.A.
5 p.m. Day 1 Program Adjourns
7:05 p.m. Phillies Game and Fireworks – Buses depart for game at 5:45 p.m.
Preliminary Program: Thursday, July 2, 2015
8 a.m. Registration Opens
THE COMPLICATED TOPIC OF BRAIN AND BEHAVIOR
8:30 a.m. The Eye as a Window to the Brain – Brian Forbes, M.D.
8:45 a.m. Seizures and Other Neurologic Issues – Sarah Hopkins, M.D., M.S.P.H.
9 a.m. Language – Cynthia Solot, M.A., C.C.C.
9:15 a.m. Development Across the Lifespan – Ann Swillen, Ph.D.
10 a.m. What Will the Future Bring?: Educational Interventions and Long-term Outcomes –
Edward Moss, Ph.D.
10:30 a.m. Coffee Break
11 a.m. Behavior in Childhood – Jacob Vorstman, M.D., Ph.D.
11:45 a.m. Psychiatric Illness: Treating What’s Treatable – Anne Bassett, M.D.
12:30 p.m. Lunch
SEARCHING FOR ANSWERS THROUGH COLLABORATIVE RESEARCH
1:30 p.m. Report from The International Brain and Behavior Consortium – Raquel Gur, M.D., Ph.D.
1:45 p.m. Report from the 22q11.2 International Modifier Gene Consortium – Beverly Emanuel, Ph.D.
2 p.m. Brain Imaging: A Tool in Understanding Development and Behavior – Timothy Roberts, Ph.D.
2:15 p.m. Concurrent Breakout Sessions (indicate choice on registration form)
Developmental Paths and Education – Ann Swillen, Ph.D.; Edward Moss, Ph.D.;
Cynthia Solot, M.A., C.C.C.
Behavior – Jacob Vorstman, Ph.D., Anne Bassett, M.D., Raquel Gur, M.D., Ph.D.
Sleep: A Practical Workshop – Margaret Souders, M.S.N., Ph.D., Kelsey Smith, M.S., L.C.G.C.
3:15 p.m. Afternoon Tea
MOVING FORWARD
3:45 p.m. Developing Resilience – Elissa Truitt, M.S.W.; Leanne Magee, Ph.D.
4:05 p.m. Transititions: Medical and Otherwise – Kayla Disibio; Aíne Lawlor, Meghan LeFevre;
Stephen Moriconi; Todd Preston
4:45 p.m. International Parent and Professional Partnerships: What’s New with 22q? – Anne Bassett,
M.D.; Shelia Kambin; Maria Kamper; Anne Lawlor; Donna McDonald-McGinn, M.S.,
L.G.G.C.; Julie Wootton
5:30 p.m. Meeting Adjourns
Closing Reception – Snacks and Soft Drinks
Registration (limited to 125)
22q and You: A Meeting for Caregivers
July 1 – 2, 2015 — Registration Deadline: Friday, June 19, 2015
Name ____________________________________________________________________________
Home Address ______________________________________________________________________
City _______________________________ State _____ ZIP __________ Country _______________
Phone ____________________________________________________________________________
Email ____________________________________________________________________________
(All fields required.)
q Parent q Caregiver q Grandparent q Healthcare Provider q Other: __________________
(please specify)
Registration Fees
Conference registration:$195 per person
(Includes meeting, Phillies ticket and transportation.)
Additional Phillies tickets: _______________ at $35 each
(Includes transportation.)
Additional Phillies tickets: _______________ at $28 each
(Transportation on your own.)
Total $__________
Thursday Breakout Session (choose one)
q Developmental Paths and Education q Behavior q Sleep
Registration will not be processed unless accompanied by full payment.
Faxed registrations will be accepted for credit card payments only.
Method of Payment
q Personal check q Institutional check (Please make check payable to The Children’s Hospital of Philadelphia.)
q Discover q MasterCard q American Express q VISA
Credit Card # ______________________________________________________________________
Exp. Date ________________________________
Mail/fax the completed registration form and payment to:
Ms. Micah Holliday, Continuing Medical Education Department
The Children’s Hospital of Philadelphia • 34th Street and Civic Center Boulevard
Philadelphia, PA 19104-4399 • 215-590-5CME • Fax: 215-590-4342 • [email protected]
Register online at www.chop.edu/cme
©2015 The Children’s Hospital of Philadelphia, All Rights Reserved. 15CME0006/WEB/05-15