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Archive for December, 2008

100_3503Thanks to the 8th grade class at The Tower School, specifically Annie McMahon, who sold delicious merangue cookies at the Camp Sunshine Pumpkin Festival in Boston! Their class raised over $1600 for Camp Sunshine, which is enough to send a family for an entire week!

Joli (and mom) spoke at the Tower School along with people from Camp Sunshine to thank the class for all their hard work and commitment to helping families in need. We were there to share how Camp Sunshine changed our lives by allowing us to meet other families with Retinoblastoma.

For more information about Camp Sunshine, a cost-free camp for families with children with life threatening illness, go to http://www.campsunshine.org.  Camp was so important for many of us Rb families because it was the first time so many of us felt “normal” for a while! Camp Sunshine runs over 25 specific diagnosis weeks!

To invite a retinoblastoma family to any of your fundraising events or to share our cancer experiences, please email liza@rbne.org.

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0000057While the holiday season is, yes, considered the most wonderful time of the year, it’s also a time when children tend to be the most frequently photographed. And, as you may be discovering, many parents first noticed signs of retinoblastoma in photos taken of their child.

While seeing leukoria — better known as the “cat’s eye reflex” — is not definitive of the cancer, it’s a good thing to get checked out if you see it in a photo.picture-1

And, unfortunately, leukoria doesn’t always show up. If you go to our “PICTURES” link, you’ll see a great set of photos of Henry. In one photo, there is no leukoria. In another photo, taken the same day (hence the cute striped outfit!), the leukoria is as clear as day!

Detecting retinoblastoma early is the best way to save a child’s vision and life.

Many of us always say, “We wish we had known what to look for in these pictures.” That’s why we’re passing on the information.

Happy holidays to you and your families!

Love,
the Families of Retinoblastoma New England

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A number of Retinoblastoma families have met up at Camp Sunshine over the years. I really encourage any Rb family to attend Camp – everyone talks about how important meeting other families have been to our own adult recovery and for the self-esteem of our children. It’s amazing that many of us only see each other 1x a year at Camp Sunshine (and, Rb week has only been for the past 2 summers!), yet we all feel like family.

Recently, an Rb dad was diagnosed with cancer. It’s tough knowing what his child had gone through, and our collective hearts ache to know that he has to go through treatment now, too.

n676255178_5193679_9895Here is a “pillowcase” project we created for this dad. It was sent all around the country to different Rb/Camp families — to me, this shows the true testament to the importance of knowing other Rb families, but also just knowing other families who have been through a similar experience.

 

Our prayers for a speedy recovery and for your strength, Rich! Your Rb friends are rooting for you!

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Using Photos

Please remember, if you are using any photos of our children, just send along an email to liza@rbne.org so that we know where it’s being seen. We’ll always say YES to you for permissions, but we just want to know where the photos are being viewed.

Even if it’s for a school project or just to use in a collage! It’s so important for us, as parents, to know where images of our children are being used.

Thanks for your understanding!

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An RBNE family will be speaking at a fundraiser for Camp Sunshine on Friday, Dec 5th at Southern New Hampshire University. If you are not familiar with Camp Sunshine, please visit their website. This is an amazing opportunity to meet other Rb families from all over the country! It was a huge moral booster for so many of us, and we often point to our Camp experience as the turning point in our lives!

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