CONNECCS Survivorship Conference

Report
MOVING FORWARD
AFTER TREATMENT
A Free Conference for Adolescent
Childhood Cancer Survivors
(ages 12 – 18) and Their Parents
How To Register:
Please complete the registration form below :
SCHEDULE
8:30-9:30
Breakfast and Registration
9:30-10:00
Welcome and Opening Remarks
10:00-10:30
Keynote Speaker - Jennifer Earls
A Survivor’s Journey
10:30-12:00
Saturday,
March 15th, 2014
8:30 a.m. – 4:00 p.m.
12:00-1:00
Lunch
1:00-1:45
Workshop Session 1
1:45-2:30
Workshop Session 2
2:30-3:30
Late Effects – Panel of Experts
Sanjeev Francis MD – Cardiologist
MGH –Cardio-Oncology Program
Laurie Cohen MD –Pediatric
Endocrinologist – DFCI
Christine Trask PhD –
Neuropsychologist – Hasbro
Naheed Usmani MD – Pediatric
Oncologist – U Mass Medical
Erin Barlow MD – Adolescent
Gynecology
Peter Manley MD – Brain Tumor
Specialist
Hole in the Wall Gang Camp
565 Ashford Center Rd
Ashford, Connecticut 06278
Sponsored by:
Consortium for
New England Childhood Cancer Survivors
and
The Hole in the Wall Gang Camp
Name of Patient Survivor
________________________________Age_________
*Must be 12 – 18 years old and off treatment
Name of Parent(s)/Guardian(s)
_____________________________________________
Email/Phone number
_____________________________________________
Treating Cancer Center
Conference Location:
CONNECCS
Childhood Cancer Survivor Panel
A Panel of Survivors– Sharing their
Stories –Question and Answer
E -mail/mail/fax to:
Molly Tower PNP [email protected]
Tel: 617-643-7664 / Fax: 617-724-0702
Mass General Hospital, Long Term Follow-up Clinic
Yawkey 8B, 55 Fruit St. Boston, MA 02114
3:30-4:00
Program Conclusion
Total # of persons
attending
__________________________ __________________
*We will not be able to accommodate for siblings.
You may attend 2 workshops. Please list 3 workshops,
in order of preference, you would like to attend, as
space may be limited.
Parent/Guardian
1.
2.
3.
____________________
____________________
____________________
Parent/Guardian
1.
2.
3.
____________________
____________________
____________________
Patient Survivor
1.
2.
3.
____________________
____________________
____________________
WORKSHOPS
1:00-1:45 p.m.
1:45-2:30 p.m.
(All Workshops run in both sessions)
Advocating for School Support, Preparing for
College and the Work Force – A discussion with
experts on how to advocate for yourself/your
child. Topics include: Neuropsychological testing,
IEP’s, 504 plans, College and Vocational Planning,
Scholarships.
Facilitated by Christine L. Trask PhD, ABPP, PediNeuropsychologist, Hasbro, Lisa Northman, PhD,
Staff Psychologist, DFCI Marybeth Morris, Ed.M.,
School Psychologist, DFCI
Affordable Care Act – What does it mean for
Childhood Cancer survivors? – A discussion of
how to navigate new health care law and it
affects the life long health care of childhood cancer
survivors. Question and answers.
Facilitated by Elyse Parks. PhD. Psychologist
Mass General Hospital
Overview of Late Effects
An updated review of late effects from cancer
treatment, including chemotherapy, radiation,
Surgery, and bone marrow and stem cell
transplantation.
Presentation by Naheed Usmani, MD Pediatric
Oncologist, U Mass Medical Center
Reproductive Health
This presentation will provide an overview of
concerns of cancer survivors regarding
reproductive health.
Facilitated by Erin Barlow M.D.- Adolescent
Gynecology, Lisa Kenney MD Pediatric
Oncology
Choosing a Healthy Lifestyle – Nutrition
and exercise are important to making you feel
good physically and emotionally. This fun
workshop will provide latest tips to apply to
your everyday life to optimize your long term
health.
Facilitated by Katlyn Stefanski RD, Marcy Gunning,
PT
Creative Expressions Through ArtDiscover your creative side with a variety of
artistic materials. Come see why a picture is
worth a 1000 words. No artistic talent require,
just bring your creative energy!
Facilitated by Christine Tatem CCLS,
Christina Marchitto, MSW, John Paul Shoup
Your Song. Your story. Your groove. Each of us
has a story to share, some through words and
poetry, others through songs, beats, and just
rocking out! Come start that process with us.
Come explore Next Step’s Song . Studio, and win
fabulous prizes. No musical experience
Necessary!!! Facilitated by:
Kimberly Khare, MA, CMT – Director of Music
Therapy at Next Step, Lorrie Kubicek MT – BC,
Music Therapist MGH, Mike Simonelli MT-BC,
Music Therapist SEEM - Collaborative
Reconnecting Socially after Cancer – A
presentation and discussion on how to
navigate reconnecting with friends, family and
the non-medical world. Explore various ways
of reconnecting and sharing - different forms
of social media, (texting, Instagram,
Facebook) talking one on one, going out with
friends, dating, exploring new ways of
meeting new friends.
Facilitated by Annah N. Abrams, MD Child
Psychiatrist, MGH, Giselle K. Perez, Ph.D
Research and Clinical Fellow, MGH
Connecticut Children's Medical Center
REACH for the STARS Survivorship Program
Hartford, CT
phone: 860-545-9630
Yale University Medical Center
HEROS Clinic
Yale-New Haven
Children's Hospital Pediatric Specialty Clinic
New Haven, CT 06510
phone -203-785-4640
Eastern Maine Medical Center
Pediatric Hematology/Oncology
Bangor, ME 04401
phone: 207-973-7572
Maine Children‘s Cancer Program
Post Therapy Wellness Clinic
Scarborough, ME 04074
phone: 207-396-7565
MassGeneral Hospital for Children
Long Term Follow-up Clinic
Boston, MA 02114
phone: 617-726-2737
Floating Hospital for Children/Tufts New England Medical Center
Hematology and Oncology
Boston, MA 02111
phone: 617-636-5535 | fax: 617-636-7738
Dana-Farber Cancer Institute
Stop and Shop Family Pediatric Neuro-oncology
Outcomes Program Brain Tumor Clinic
Boston, MA 02215-5450
phone: 617-632-2680
Dana-Farber Cancer Institute
David B. Perini Jr Quality of Life Clinic
Boston, MA 02215-5450
phone: 617-632-5124
UMass Memorial Medical Center
UMass Survivors Clinic
Worcester, MA 01655
phone: 508-856-4225
Baystate Medical Center
Pediatric Hematology & Oncology
Springfield, MA 01199
phone: 413-794-9338
Children's Hospital at Dartmouth
Pediatric Hematology and Oncology
One Medical Center Drive
phone: 603-650-5541
Hasbro Children's Hospital
CHAMPS Program
Providence, RI 02903
phone: 401-444-5241
Vermont Children’s Hospital at Fletcher Allen
Pediatric Oncology Long Term Follow Up Clinic
Burlington, VT 05401
phone: 802-847-2850

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