While you can check out the blogroll of resources on the right hand column, we wanted to include a little bit more information on each blog.
Camp Sunshine: This is where many of the Rb families met for the first time. And, it’s the moment we really felt the importance of our children (and us!) meeting face to face. Camp Sunshine is a free retreat for families with children with life threatening illnesses. They have different diagnosis weeks, and 2007 was the first time retinoblastoma was offered. Many of the parents can attest to the fact that this was a huge turning point for many of our children and for many of us!
Daisy’s Eye Cancer Fund: When you think you can’t pull through this whole Rb experience, head over to Daisy’s Eye Cancer page to be inspired by a wonderfully committed woman named Abby White. If you are an Rb family, it won’t be long before you know Abby! She is a bilateral survivor and has made it her life mission to serve as an advocate and angel to children in medically under-resourced areas. She focuses much of her work in Kenya as well as other places around the world. Abby has worked hard to keep very accurate information about Rb.
Retinoblastoma of Arizona (RbAZ): Colleen Crowley has been an amazing force in the support network of Rb families. She began Retinoblastoma of Arizona and has inspired many of us to provide a similar group to people in our region. Head over to RbAZ’s site for some wonderful personal stories of Rb children.
Retinoblastoma Midwest (www.rbmw.org) Sister site started by Lori Kofron Graham to support families in the Midwest region.
Operation Swan Dive: If you live in the MA/NH area (or if you don’t mind driving a little bit!), this is a yearly fundraiser to support Lyrics for Life – an organization started by Sister Hazel front man, Ken Block. It’s a 2-day event of skydiving, music, fun, food, and fundraising! It takes place in July. This past year, Joli was the “guest speaker”, and we’re big fans of the 3 strong women who organize the day.
Massachusetts Eye and Ear Infirmary: For many of us in the Boston area, we were treated by Dr. Mukai over at Mass Eye and Ear Infirmary. Typically, if your child needs chemotherapy, he/she will likely be followed at the Yawkey Clinic and Mass General Hospital. We love the staff there and had a very positive experience with everyone!
Memorial Sloan Kettering Hospital: Many of the families in the NYC and CT area see Dr. Abramson in NYC. Dr. Abramson is pioneering a new treatment method of intra-arterial chemotherapy in conjunction with Dr. Gobin at Cornell and has been successful at shrinking tumors and saving Rb affected eyes with this method (according to some of our Rb families). We love the staff at MSKCC! (Thanks to Sally, Henry’s mom, for this info!)
