Raising Childhood Cancer Awareness with Microsoft .NET Technologies

All we need to make us really happy is something to be enthusiastic about.
Charles Kingsley

September is childhood cancer awareness month. Thus far, not a lot of traction has been made with this month or its associated day (September 12th). I have decided to join the troops on changing this. Fortunately, the trail has already been blazed by the Komen foundation, so a few years from now, we may see gold ribbon branded products everywhere. I would like to see awareness raised this year.

I cannot detail the entire project now, as it is incubating, but it is centering around our family vacation 2009. We are heading on a 12 day tour of Montana, Wyoming and South Dakota (essentially a Yellowstone/Grand Teton to the Black Hills loop). It could either end up really big or flop. I have some people in the background trying to help me make it on the bigger end.

Childhood Cancer Details

Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one’s attitude in any given set of circumstances, to choose one’s own way.
Viktor E. Frankl

As many of you know, my daughter Miranda was diagnosed with Ewing’s Sarcoma on September 6, 2007. We found the lump on her back on August 23rd in Louisville and she entered the hospital on September 6 with a 104.5 degree fever. We spent most of the next four months (sans 16 days) in the hospital. She is now 1 year and 4 months out of treatment, with her next oncology visit on August 6.

Here are some stats

  • Every 40 minutes, a child is diagnosed with cancer in the United States
  • Every 4.5 hours, a child dies in the United States
  • Worldwide, 25 children are diagnosed every hour and 18 die
  • In the United States, pediatric cancer is the number one disease killer of children
  • In the United States, only child abuse kills more children than cancer
  • Worldwide, pediatric cancer is the second disease killer of children, second only to pediatric AIDS
  • If Africa is excluded from stats, pediatric cancer is the number one killer disease, killing 4 times the number of children than AIDS
    85,000 for cancer, 22,000 for pediatric AIDS
  • We cannot firmly pinpoint the cause of most forms of pediatric cancer. This means we cannot simply alter behavior and avoid it. Every child is potentially at risk.
  • Most childhood cancers are treated the same way they were decades ago.
    For Ewing’s the chemo drugs used are the same used in the 1960s, although the time schedules and combinations have changed
  • Much of the NCI funding for pediatric cancer goes to study pediatric AIDS
  • Most children that live have long term effects from treatment
    • Miranda is 70% likely to develop some form of heart disease/condition from her treatment
    • Miranda is still undergoing physical therapy for treatment related side effects
    • Mentally and emotionally, most children take years to recover from treatment

As it “only” affects around 12,500 children each year (median of stats), the drug companies are not going to rush to research new regiments for childhood cancer.

The Tour

Our task is not to fix the blame for the past, but to fix the course for the future.
John Fitzgerald Kennedy

While it was not explicitly planned as a cancer tour, our vacation has the following dates:

September 1, 2009 – exactly 2 years after Miranda was first admitted to the hospital
September 12, 2009 – Childhood Cancer Awareness Day 2009

What I have decided is to use our vacation as an awareness trip, as well as a vacation. We are going to make hundreds of gold ribbons to hand out to people we meet along the way. In addition, I am working to get the press involved in raising awareness.

The Geeky Side

In the next week, I am going to launch a new site to detail our trip and our awareness efforts. The site is going to be built around the latest Microsoft technologies and will include a blog on how the site was built, so those of you struggling with Silverlight, ASP.NET MVC might enjoy the details. I have chosen these technologies as any links back to the site help raise awareness of the site and, more importantly, of childhood cancer.

I will have more details very soon. Whether the site is big news or small, it will be a good launch pad to learn the following, as they pertain to a real life site:

  • SketchFlow
  • Silverlight – primarily on media
  • Test Driven Development
  • Refactoring

Hopefully that stirs you a bit

Other Notes

Don’t say you don’t have enough time. You have exactly the same number of hours per day that were given to Helen Keller, Pasteur, Michaelangelo, Mother Teresea, Leonardo da Vinci, Thomas Jefferson, and Albert Einstein.
H. Jackson Brown, Jr.

This is a very personal thing for me. While my daughter has not yet reached five years, I firmly believe she is going to live a long, happy life. I wish I could say the same for Cody Robinson or Cassidy Schuttinga, two children we have been close to who did not win the cancer battle. While I would much rather put the past behind me and forget the pain we endured, there are so many children who are hurting now because we have not cured this disease.

But the cure will only come with research and research will likely only be fully funded with awareness. I don’t want to have my vacation spent campaigning, but life deals funny cards some time (just ask James Butler (aka “Wild Bill” Hickok). If I can do something, perhaps something a little silly, and raise awareness, then I will have spent a bit of time doing something good. If we can’t do something good, what is life for?

What I Want From You

Do you know what my favorite part of the game is? The opportunity to play.
Mike Singletary

All I am asking is you get what you want from the site, when it launches, and spread the word. Each click is a person and each person brings awareness. In return, here is what you can get from this:

  • If you are a cancer parent, or know a cancer parent, you can help raise awareness without cost
  • If you are developer, you can learn from my site building escapades
  • If you are helping us raise awareness, you can do good for others

I am going to do this. You can come along for the ride.

Peace and Grace,

Twitter: @gbworld


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