Welcome to the Summer Tour blog. I have never blogged before so bear with me while I find my way blogging the summer tour. The 2013 Summer Tour is our first Summer Tour with the National Angel Quilt.
Since my diagnosis, (for those who don’t know me, I was diagnosed with a pediatric bone tumor when I was ten, and started Make Some Noise: Cure Kids Cancer Foundation, Inc. when I was eleven), besides surving, my two primary goals have been to raise national awareness and raise millions if not billions of research dollars to help find the cures for childhood cancer. Kids deserve the chance to grow up and it is not fair that pediatric cancer gets so little funding and attention. We need to find the cures.
We started the National Angel Quilt about a year after incorporation. The National Angel Quilt was actually my mom’s idea not mine but it was a really good one. She had four mom friends who lost their kids to cancer all in about two weeks of each other and like me she was really upset that the country has no idea who we are losing. We already had the foundation up and running and I was always trying to figure out how to make as much noise across the country as possible to raise national awareness so we can speed up the cure research. When she dreamt up the National Angel Quilt we both knew this was going to be powerful. “Angel” came from the fact that every time a child dies, their parents post on their carepages that their child earned their “angel wings.” And we called it the National Angel Quilt because this is a national issue, well actually a global issue but in the US alone, we have lost between twenty thousand to thirty thousand kids to cancer in the past ten years alone. The quilt features images of some of the children we have lost to cancer. When families hear about the quilt and decide to add thier children to be remembered. Their families send us photos which we sew into a square panel and the families personalize their children’s panels and each one is different.
The Quilt gives the country a chance to get to meet the kids we have lost and understand that these were not just statistics they were great kids with futures until one day when they were diagnosed with cancer. If the country could meet all the kids it wouldn’t be so hard to ignore childhood cancer. The children on the quilt were all incredible heroes. They deserve to be remembered. They should still be here with us growing up, playing sports, going to school, learning to drive, graduating, having jobs, spouses, kids. They don’t get that chance. We are really honored to be able to share each of the angels with the country and to bring awareness for kids cancer in a way that means something.
Once we had started the quilt another goal of mine has been to get the quilt to as many places in the country as possible because I feel I need to help keep their memories alive and share them with as many people as possible. There are thousands of kids like me who were normal healthy kids until one day when something wasn’t right. For me, it was a pain in my hip. For others it could be any number of inoquous symptoms that just don’t raise alarms because people think childhood cancer is so rare. For 1 in evey 320 kids, that pain or other symptom turns out to be cancer. For thousands of kids every year, it means giving up your normal life for long hospital stays, chemotherapy, radiation, surgeries, bone marrow transplants, and more. There are up to 20,000 kids a year in active treatment for cancer in this country, and any one of us could wind up on the national angel quilt.
I owe it to all the kids we have lost to keep their memories alive. They fought to live as hard as all the rest of us cancer warriors. Many of them did what they could to help raise awareness and sometimes even research funds too. I am inspired by all of the kids. I can help them keep trying to get people to pay attention to childhood cancer. They deserve to be remebered. They deserve to be heard. I owe it to millions of kids who haven’t been diagnosed yet to help raise the research funds to find the cures so that they have the chance to grow up.
So far, the quilt has been to PA; four locations in NJ; Boston; Maryland; Denver; Seattle; Rochester NY; and Atlanta, Georgia. I am very grateful to all the venues who have been brave enough to host us so far. We don’t get accepted everywhere we try. In fact we get turned down a lot. So it is really nice when you find someone who cares enough and is willing to help. Each marketing director who has agreed to host the quilt at their venue has been one of those special people who cares.
We will continue to get the quilt to as many places across the country until we have done our job! For the 2013 Summer Tour, we will be in Michigan, Iowa, Kansas City, Tulsa, Dallas, and hopefully a few more places.
We head out on the Summer Tour today, and I will be posting as we move around the country with the National Angel Quilt this summer. I had hoped to have an RV for the 2013 Summer Tour because I thought it could help get more attention. We didn’t manage to get one donated so we got a trailer instead. I think it looks pretty good and I hope it helps get people to notice childhood cancer. Thank you very much to Mrs. Christie and NJ Heroes for giving me grant money towards the summer tour. I wouldn’t have this cool trailer without your support! Thanks also to Trailer Super Store in Mechanicsburg PA, to my mom for the great graphics work, and to Tyler Goodman at Advertgraphix for rallying for the cause and getting the wrap on so fast!
Founder/Ex-Offico Chairman, Make Some Noise: Cure Kids Cancer Foundation, Inc.