Wednesday, September 9, 2009


September 9, 2009

Note: I updated the facts I list below to reflect that actually two new cancer drugs have been approved for pediatric use in twenty years. I will change the actual PDF tomorrow, so you can print it again if need be.

Today presents another satisfying calender opportunity: 09/09/09 (right, Erin F?).

My phone rang yesterday. I looked at the incoming ID and expected Elaine's voice to come cheerfully piping through the receiver. Instead, it was my friend, Adam's sweet voice, inviting me over for a play date this afternoon. I'm going to knock off work a little early and go to his house to play X-Plane, which mostly involves Adam skillfully maneuvering planes through flight simulation software and me watching carefully trying to figure out how he can keep track of so many different instruments and gauges at the same time.

I have known Adam most of his life. When he was a little guy he didn't smile much for the camera. A couple of years ago he had shifted to the cryptic "Mona Lisa" smile.

Now, I get even more:

But it his broad, rarely photographed smile that comes when he has just completed a tricky landing that makes me want to hang out with him and play X-Plane.

Tonight the US Men's team plays another World Cup qualifier, this time against Trinidad & Tobago with kickoff at 6:00 Texas time. I sure hope the game is in hand after the first half so I can switch to President Obama's Health care speech at 7:00 without having to weigh to merits of major policy speech versus soccer.

AND speaking of planning ahead, please put this week's Lanyard Workshop on your calender (Friday, September 11, 4:00-7:00 at my house). September is Pediatric Cancer Awareness Month.

I have created a Neuroblastoma Cancer Fact Sheet to support Erin's Dream Lanyards. (Click here for your own PDF). Here's what it says:

Neuroblastoma Fact Sheet

What is Neuroblastoma?

Neuroblastoma is a common but overlooked cancer in kids. It is a cancer of the sympathetic nervous system, and usually presents as a solid, malignant tumor that manifests as a lump or mass in the abdomen or around the spinal cord in the chest, neck, or pelvis. Neuroblastoma is often present at birth, but is most often diagnosed much later when the child begins to show symptoms of the disease. In the majority of cases (73%), neuroblastoma has already spread to areas outside the original site at the time of diagnosis.

Some Statistics about Neuroblastoma:

  • 5%-7% of all childhood malignancies, but 15% of pediatric cancer deaths
  • about 1 in 6000 children will be diagnosed with neuroblastoma by the age of five
  • 1 in 100,000 per year in the US
  • average age at diagnosis is two
  • about 25% of newly diagnosed neuroblastomas are found in children under the age of one
  • children under the age of one have a cure rate as high as 90%
  • children with high risk disease have a five-year survival rate of around 55%
  • relapsed neuroblastoma has no known cure

Why does Erin's Dream Lanyards raise money for neuroblastoma research?

  • Over the past two decades, only TWO new cancer drugs has been approved for pediatric use.
  • Only 3% of the National Cancer Institute budget goes towards pediatric cancer research.
  • Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children with cancer have disease that has spread at diagnosis.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the US invests approximately $595,000 for research per victim of peditric AIDS and only $20,000 for each victim of childhood cancer.
  • Research funds are scarce as most money is diverted to well-known adult forms of cancer, such as breast and prostate.
  • In 2005, the American Cancer Society provided only 2.5% of funded grants , or 1.85% of dollars spent on research to pediatric cancer.
Note: I updated the facts to reflect that actually two new cancer drugs have been approved for pediatric use in twenty years. I will change the actual PDF tomorrow, so you can print it again if need be. I have to leave for soccer right now.


  1. Hey thanks for that fact sheet. I actually have been looking around for exactly this to post facts as status updates for FOW on facebook for September.

  2. Thanks for the fact sheet! I hope you don't mind me swiping it and posting it on my blog!

  3. I will bring cake on Friday.


  4. This fact sheet is great!! I've been trying to find a concise list of facts like this for awhile now!

    Wish I could be there for the lanyard workshop!!!

  5. You can alwasys watch a taped version of a health care speech and not miss anything...sports however are meant to be enjoyed "live" since the transcript is not nearly as exciting. Will has his first game at 1:30 on Satrrday afternoon

  6. Yes, 09-09-09 was on our calendar! Besides baking 9-shaped pretzels, we stood around our atomic clock, which displays the time and date, and admired 9:09:09 on 09-09. I was very pleased.

  7. I'll probably swipe the fact sheet too. It's perfect. Dismal and terrible and depressing, but perfect. So, yes, we have many reasons to bead and sell lanyards...and cupcakes!

  8. Genial fill someone in on and this fill someone in on helped me alot in my college assignement. Gratefulness you on your information.