Families and survivors gather for a group photo at the Jefferson Memorial.
Monday, October 9, 2017
We were honoured and excited to welcome fellow parents and survivors to the first Natio
nal Retinoblastoma Family and Survivor Day in the USA!
Coming together with others who are impacted by retinoblastoma is deeply healing and immensely uplifting. Sharing experiences and knowledge, friendship, laughter, hugs and hope, and sometimes tears.
This Family and Survivor Day was funded by generous contributions to Marissa Gonzalez’s 25th Cancerversary Family and Survivor Day fundraiser.
We were thrilled to present the following program, and to share the empowering energy of our community meeting in Washington DC. We look forward very much to meeting you all again very soon!
Download a PDF version of the program, or explore the sessions via the panel below.
7:45 – 8:15am: Continental Breakfast & Networking
8:15 – 9:00am: Welcome Remarks and Introductions
Session Leader: Marissa Gonzalez, World Eye Cancer Hope US
9:00 – 9:50 am: Motivational Monday Morning
Session Leader: Bruce Van Horn, Motivational Speaker and Life Coach
Session Topics:
- Retinoblastoma and living to your fullest potential
- Empowering yourself and others
- Creating a clear and balanced plan for your future
10:00 – 10:50 am: BREAKOUT SESSIONS
Refreshments will be available during breakout sessions
Breakout Session One: Ask a Survivor
Session Leaders: Len Burns and Katherine Derganc-Billings, Retinoblastoma Survivors
Session Topics: An open Q&A for parents and caregivers with adult survivors – a safe place to seek guidance on any topic relating to retinoblastoma, from treatment to survivorship.
Breakout Session Two: Ask a Survivor: The Younger Generation
Session Leaders: Marissa Gonzalez, World Eye Cancer Hope USA; and Melissa Mills, Stanford Children’s Health
Session Topics: An open Q&A for teenagers with adult survivors – a safe place to ask any question: driving, dating, self-esteem… – no topic is off limits!
11:00 – 11:50 am: Parent panel
Session Leaders: Thomas Reid, World Eye Cancer Hope USA; Mark Billings; World Eye Cancer Hope USA and Marty Gonzalez
Session Topics:
- Caring for a child with retinoblastoma
- Family systems – Maintaining healthy relationships during treatment
- Parental and family self-care
- Financial planning for a child with cancer and beyond
12:00 – 1:15pm: LUNCH
Lunch will be served from 12pm. The lunchtime session will begin at 12:15pm.
12:15 – 1:15 pm: Lunch Session – Survivorship and Self Care for Rb Survivors and Parents
Session leaders:
- Sandra Staffieri, Research Orthoptist & Retinoblastoma Program Coordinator, Royal Children’s Hospital, Melbourne, Australia.
- David Freyer, Co-Medical Director, Adolescent and Young Adult Program, Norris Comprehensive Cancer Center, University of Southern California, USA.
- Morgan Livingstone CCLS, WE C Hope Canada.
Session Topics:
- What is survivorship?
- Taking control of your healthcare needs
- Balancing emotional and physical stress
- Comforting your child during treatment
1:30 – 2:25pm: Genetics and Retinoblastoma
Session Leader: Dr. Helen Dimaras, Director of Global Eye Health Research, Department of Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, Canada; and Melissa Mills, Rb Survivor, Genetic Counselor at Stanford Children’s Health
Session Topics:
- Second primary cancer risks
- Family planning – what do I need to know before starting a family?
- Genetic counseling services
2:45pm: Washington D.C. Sightseeing Bus Tour
Join us for a FUN and interactive private bus tour through the nation’s capital. This one-of-a-kind Family and Survivor Day Tour will include stops and photo ops at various points of interest, ending with a celebratory dinner at a local restaurant. You’ll be sure to leave with a smile on your face, new friendships and connections with people from all over the world through the common bond of retinoblastoma.
The bus tour is at capacity as of 9/29/17. We apologize for the inconvenience to guests registering after this date.
6:45 – 8:45pm: Celebratory Reception
Location: The reception will be held at the Bell20, An American Tavern, Crystal City Marriott – our One Rb World event hotel.
A joyful dinner shared with families, survivors and medical professionals joining us for the evening from around the world.
The reception includes heavy appetizers and non-alcoholic drinks. Additional entrees and alcoholic beverages may be purchased at the venue.
