Reflecting on One Retinoblastoma World

Sunday October 29, 2017

Washington D.C. hosted the 4th One Rb World meeting on October 9 – 11, 2017, including the first US National Family & Survivor Day. WE C Hope USA President, Marissa Gonzalez, reflects on her experience planning and hosting the event, and what the One Rb World community means to her.

Marissa and Sandra Staffieri, visiting delegate from Australia, stand in front of the WWII Memorial and Washington Monument, holding the One Rb World program.

Marissa and Sandra Staffieri, visiting delegate from Australia, pose with the One Rb World program.

I never thought I would say I had found my purpose in life because I had cancer. Yet this disease I battled for ten years has turned into something I can do to help others.

It’s taken me a little while to be able to put into words what an amazing experience One RB World has been. This has been one of the most challenging events I’ve ever planned, but also one of the most rewarding things I’ve done. I poured my heart and soul into executing the best possible conference, and overall, I think it was a huge success.

Three weeks on, and I’m finally emerging from the intense emotional and physical state I found myself in throughout the final planning stages and three days of the event itself.

Firstly, I am most proud of my warriors – parents and survivors who traveled from near and far to attend and participate in the conference. And all those who attended via the live stream. I thank each one of you for being part of this conference, for learning, sharing, and helping to strengthen our community.

Thank you to the World Eye Cancer Hope team from around the world, and especially the USA branch for your tireless work helping make this conference a success. Thank you to Dr. Jesse L. Berry for organizing a fantastic roster of medical professionals from across the globe. Thank you to our fearless leader Abby White for all you do each and every day for children around the world with retinoblastoma.

Our presenters – medical professionals, researchers, survivors and parents – brought wisdom and knowledge to the conference. They gave insight into the management of retinoblastoma around the world, and solutions to some of the biggest challenges. The professionals heard firsthand what it’s like to live on the other side of the disease, and many have told us they will take this knowledge back to their own practice.

Cutting edge and game-changing research from around the world was presented, highlighting the importance of working together to gain the best results.  One Rb World Scientific Program Chair Jesse L. Berry shared a ground-breaking approach to safe biopsy of retinoblastoma, a huge step forward in guiding treatment.

Marissa, Jesse Berry, Stephen and Sarah Haddad.

Left to right, Sarah Haddad BCO, Marissa Gonzalez, Jesse Berry MD, Stephen Haddad BCO.

I feel immense pride for raising over $5,000 to produce the first-ever Family and Survivor Day in the USA. Watching our guests meet and form life-long bonds was heartwarming. Knowing that it was the first time for many young adult survivors to be face to face with another survivor was incredible.

Group photo outside the Jefferson Memorial.

Survivors young and not so young gather with their families in front of the Jefferson Memorial.

I didn’t meet another RB survivor until I was 30, and I remember the first time I met a child who was undergoing treatment still. Seeing children from different countries play and run around Washington D.C.’s historic monuments on our sightseeing tour reminded me how resilient little ones are. The importance of bringing families and survivors together was not lost on anyone, including the medical professionals.

When I needed a quick break during the conference, I found myself escaping to the Child Life room.  Simply scooping up a baby or toddler to hug and play with for a few minutes. Not once did I lose sight of the fact that these children are battling RB, or are recently in remission from it. Being with these precious babies all week still makes me cry, I am so aware of what they are going through.

Watching their parents befriend other parents, survivors and doctors was amazing – knowing they are getting connected to the RB community was tremendous.

My mom never knew another RB parent, I never knew another kid with cancer. To watch (and be part of) the giant leaps forward happening now through the efforts of so many people brings me tears of relief. Being able to experience these connections with my own mother was probably the best part of the week. Knowing how far our community has come since the 1980’s is awesome.

I want parents to know how much harder it was before the Internet, smartphones and instant access to information. I want you to know that battling this in the year 2017 is easier than in 1982 – even if it will never be easy. I want you to know that having others to lean on who do know what you are going through is going to help you and your child forever.

It’s hard to believe the conference has come and gone, but in many ways, there is more work now than the planning of the event. Thank you all for trusting me with the planning of One Retinoblastoma World. Being able to help in uniting people from around the world to change the RB experience has been an honor.

Two children sit together, one wearing a One Rb World t-shirt.

International friendships are made among all ages at One Rb World.

I didn’t choose to have cancer for ten years – I didn’t choose to have cancer at all. I didn’t choose to lose an eye; I didn’t choose to have half of my face and eye socket reconstructed multiple times because of cancer. But I do choose to not sit idly by and let others figure out how to help. I choose to take those challenges and do something that changes the experience for myself and for other people.

Marissa kneels next to the words “I Have A Dream” engraved into the stone landing from where Martin Luther King Jr. delivered his famous speech at the Lincoln Memorial.

I look forward to representing every person affected with retinoblastoma to the best of my ability. I promise to do everything in my power to encourage and empower my fellow survivors, parents, children, and the professionals who care for us all.

With Respect, Gratitude and Love,

Marissa D. Gonzalez

President, World Eye Cancer Hope USA

Bilateral Retinoblastoma Survivor

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