MOVING FORWARD AFTER TREATMENT A Free Conference for Adolescent

Childhood Cancer Survivors (ages 12 – 18) and Their Parents

Saturday,March 15th, 2014

8:30 a.m. – 4:00 p.m.Conference Location:

Hole in the Wall Gang Camp565 Ashford Center RdAshford, Connecticut 06278

Sponsored by:

CONNECCS Consortium for

New England Childhood Cancer Survivors and

The Hole in the Wall Gang Camp

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 Childhood Cancer Survivor Panel A Panel of Survivors– Sharing their Stories –Question and Answer

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 3:30-4:00 Program Conclusion

*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

4. ____________________5. ____________________6. ____________________

Patient Survivor

7. ____________________8. ____________________9. ____________________

How To Register:Please complete the registration form below :

E -mail/mail/fax to:Molly Tower PNP mtower@partners.orgTel: 617-643-7664 / Fax: 617-724-0702Mass General Hospital, Long Term Follow-up Clinic Yawkey 8B, 55 Fruit St. Boston, MA 02114

Name of Patient Survivor

________________________________Age_________*Must be 12 – 18 years old and off treatmentName of Parent(s)/Guardian(s)

_____________________________________________

Email/Phone number

_____________________________________________

Treating Cancer Center Total # of persons attending__________________________ __________________

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, Pedi- Neuropsychologist, 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 ofhow to navigate new health care law and itaffects the life long health care of childhood cancersurvivors. Question and answers.Facilitated by Elyse Parks. PhD. PsychologistMass General Hospital

Choosing a Healthy Lifestyle – Nutritionand exercise are important to making you feelgood physically and emotionally. This fun workshop will provide latest tips to apply toyour everyday life to optimize your long termhealth.Facilitated by Katlyn Stefanski RD, Marcy Gunning,PT

Creative Expressions Through Art-Discover 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

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

Overview of Late Effects An updated review of late effects from cancertreatment, including chemotherapy, radiation, Surgery, and bone marrow and stem cell transplantation.Presentation by Naheed Usmani, MD PediatricOncologist, 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

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

Connecticut Children's Medical CenterREACH for the STARS Survivorship ProgramHartford, CT phone: 860-545-9630 Yale University Medical CenterHEROS ClinicYale-New HavenChildren's Hospital Pediatric Specialty ClinicNew Haven, CT 06510phone -203-785-4640 Eastern Maine Medical CenterPediatric Hematology/OncologyBangor, ME 04401phone: 207-973-7572 Maine Children‘s Cancer ProgramPost Therapy Wellness ClinicScarborough, ME 04074phone: 207-396-7565

MassGeneral Hospital for ChildrenLong Term Follow-up ClinicBoston, MA 02114phone: 617-726-2737 Floating Hospital for Children/Tufts New England Medical CenterHematology and OncologyBoston, MA 02111 phone: 617-636-5535 | fax: 617-636-7738Dana-Farber Cancer InstituteStop and Shop Family Pediatric Neuro-oncology Outcomes Program Brain Tumor ClinicBoston, MA 02215-5450phone: 617-632-2680Dana-Farber Cancer InstituteDavid B. Perini Jr Quality of Life ClinicBoston, MA 02215-5450phone: 617-632-5124

UMass Memorial Medical CenterUMass Survivors ClinicWorcester, MA 01655phone: 508-856-4225 Baystate Medical CenterPediatric Hematology & OncologySpringfield, MA 01199phone: 413-794-9338Children's Hospital at DartmouthPediatric Hematology and Oncology One Medical Center Drive phone: 603-650-5541

Hasbro Children's HospitalCHAMPS ProgramProvidence, RI 02903phone: 401-444-5241 Vermont Children’s Hospital at Fletcher AllenPediatric Oncology Long Term Follow Up ClinicBurlington, VT 05401phone: 802-847-2850