FAMILIES AND INDIVIDUALS:
Families who are looking to connect with local retinoblastoma families should feel free to email Liza(at)rbne(dot)org
For many of us in this network, we found that personally reaching out to another family was the best support we could have received through the cancer journey. Because Rb is so rare, it’s difficult to find families in your area to meet. But, meeting other Rb survivors (children and families) is important during this crazy time!
We have all been there — some more recently than others. And, nearly all of us have had a different course of treatment for Rb (enucleation, radiation, chemotherapy, laser, cryo, or combinations of these) and our families have all been diagnosed at different ages and stages.
While we all have well-meaning friends and families, it is so helpful to talk to a parent who completely understands the journey — someone who knows what to say and what not to say, and who knows when to say the right thing and when to just listen.
FOR EVENTS, CLASSES, OR ORGANIZATIONS:
A few of our New England families have spoken to groups and classes not only about retinoblastoma but also about our experiences as parents, siblings, and survivors. Families have spoken at cancer fundraising events, biology classes, 
healthcare classes, religious organizations, and community organizations. They have talked about their experiences navigating the health care systems, insurances, the emotional roller coaster of diagnosis and treatment, and the overall challenges and blessings of parenting a child with cancer.
Inviting a family to speak about their experiences with cancer helps to bring a personal perspective to the disease. Families who have been affected by cancer are often looking for ways to educate others and raise awareness. Especially in the case of retinoblastoma, very few people have ever heard of the pediatric cancer and even fewer know signs to look for in these cases.
If you would like to invite a family to speak at your event, please contact Liza at liza(at)rbne(dot)org. She can help arrange for family members in your area to speak about their experiences.
