This site is here to provide information and resources for families faced with a diagnosis of retinoblastoma. We also will post upcoming activities and events for RbMW. We hope to gather families with retinoblastoma from Iowa, Illinois and Missouri for fun events! The first kick off event will be planned in St. Louis for this summer-more information to come soon!! Welcome and we’re so glad you are here!
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I AM SO PROUD OF YOU!!! Way to go, Lori!! Just FYI — we are Retinoblastoma New England (no “of”). I think someone else is “of” but is no longer active.
YOU DID IT!! WAY TO GO!!
Sorry about that Liza. On your “About Us” it states: “Retinoblastoma of New England is a site created by families in the New England area who have a child or children with retinoblastoma.” I’ve changed the link name on here. Thank you so much for all of your help!!!
Great job Lori! I’m proud of you
Hey all!
I am new to Rb. 3 1/2 weeks ago, my 10 month old granddaughter Savannah was diagnosed with Rb. About 6 days after diagnosis, she had her right eye enucleated and a small tumor in the left eye was frozen. My husband and I are still in shock about this all. We are 3 hours away from our son, daughter in law and Savannah, so we don’t get to see her often enough. Her other grandparents do, however get to see her quite often, so they may be “getting over” the initial shock.
It is great to know that there are other folks in our area (and Savannah’s) that we can get support and info from. We intend to be here on a returning basis. Thanks for being here.
Chris, Let me know if you will be in the Iowa City area by sending an email to me at lori@rbmw.org. I’d be happy to meet your family.
Great job Lori!
I wish you all the success “gathering” your Midwest Rb families! It may be unfortunate the reason (retinoblastoma) but the family network and support is a wonderful thing! At some point we should plan a joint gathering!
JoAnne
freewebs.com/rbmn
We’re coming to the kickoff event!! yay! Can’t wait to see you there!!!
Hey Jessica, thanks for kicking things off on Sunday. The weather didn’t cooperate, but it was nice to meet Cole and Chris and Heather. Well, you gotta start somewhere. Hopefully more people will come out for the next one as the word spreads.
Hi everyone,
Sorry we were not able to make the trip to St Louis, but hope to meet up with everyone at some point in the future . We are relatively new to this world, our 3-1/2 year old daughter was diagnosed on April 30, 2009 and she had surgery to remove her right eye on May 1st. We started chemo on June 3rd. Thanks for creating this website and all of your support.
Hi Everyone! We live in Chicago and have a daughter Reece 2 yrs old with Bi-lat Retinoblastoma. Glad to have found this site!
Thank You All