Archive for September, 2010

If we have enough people RSVP…

The next Retinoblastoma New England get together will be on Monday, October 11th from 11am-2pm at Stonehill College, Easton, MA. Easton is approximately 30 minutes south of Boston, 2 hours from Hartford and New Haven, CT, and 4 hours from New York City.

There are reasonably priced hotels just a few miles from campus. If you are traveling far, we suggest you stay at one of the area hotels on Sunday night.

Activities include games, arts and crafts, and lots of food! We ask that each family brings either a dessert, side dish, or drink to the event.

Please comment or RSVP by emailing Liza@rbne.org.

Thank you!

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Hi friends!

I wanted to use this space to link to any YouTube videos that people have of their retinoblastoma story.

When Joli was diagnosed, I knew I wanted to document our journey. I wasn’t sure what purpose it would serve at that time, but I knew I had to do it. Thankfully, we put together a  great video that shows some of the reality of the Rb process but also the strength and beauty of a survivor.

Now, 5 years later, people have emailed to ask about Joli’s progress. In her own words, we created a very quick video (no tripods or anything fancy — this was done with a camera propped up on a sock and a book cover!) for people to see how amazing she has grown up to be and how good she is with her prosthesis.

One of my all time favorite videos is of Leah, one of Joli’s best friends from Camp Sunshine. It’s just so perfect.

We hope that this site has been a source of positive information for you! Please be sure to contact us if you have any questions at all!


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