Saturday, November 22, 2008

Childhood Cancer Awareness

Some might be aware that I have been beating the pavement as best as I can trying to get anyone of our Michigan Senators to introduced bill HR 7153 National Childhood Brain Tumor Prevention Network Act of 2008 into the Senate in January 2009 and reintroduced into the Congress by my Congressman McCotter. I have not been very successfully, yet. If anyone is willing to help me I would so appreciate a partner in crime so to speak. I am planning to go to Washington in the beginning of May '09 for Brain Tumor Awareness Week. There is a big 5k run/walk at the end of the week (I think it is usually on the weekend). If anyone is interested in participating in the run/walk with me please let me know. I also plan to spending part of that week meeting with the my senators and congressman's health aids (along with some other parents). I guess the Senators and Congressman typically only meet with lobbyist personally. Activist get to meet with the aids.

But I wanted to share with you all AJ's Dad's comments to a US News Report article from the end of October. His comments were a real eye opener for me. I hope he doesn't mind me copying them here, but I think it is important for all of you to read. It has helped me to understand why something I am told is so rare, is starting to seem common.

Childhood Cancer Awareness and Funding
I've lost my Mom and Dad both to cancer. They both had good long lives. Still, very sad. But, I have to tell you, the pain and sadness of losing my 14 year old son Alex to childhood cancer simply overwhelms those losses. Orders of magnitude. Like an atomic bomb compared to a spark.


He was a happy, healthy and athletic young man. He was diagnosed on Fathers Day 2007. And he left us on January 5th, 2008. When your parents die you are an orphan, when your spouse dies you are a widow. But there are no words for parents that lose a child. And, it’s a lifelong sentence.


Childhood cancer is considered "rare". Rare has two meanings in this case, happening to your child or someone elses. One in 300 children will be diagnosed with cancer before age 20. That’s 46 kids every school day. 12,500 diagnosed every year. 3,000 kids, or 1 in 4 or 5 will not survive.


It is the #1 killer disease of our children today, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Each year 35-40,000 are in treatment. Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year! Does that sound RARE?


And yet, awareness and funding for childhood cancer is woefully inadequate. The National Cancer Institute's budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%. And, while the American Cancer Society and others parade bald kids around, it's for sympathy only, the funding they give towards childhood cancer is the same, 3%.


Two major fundraisers for childhood cancer research are St. Baldrick's Foundation and Alex's Lemonade Stand. They rely on parents to shave their heads or sell lemonade to raise money for childhood cancer research. To save the lives of the children being raised in the richest nation on earth. Think about that.


While it sounds like a bad comedy, it is a national tragedy. What are the last 2 national tragedies? When the shuttle went down, did we ask the astronauts families to figure out the problem with the O-rings? After 9/11 did we ask the victims families to "help us out with this war thing?" Yet it's our approach for dealing with the #1 killer disease of our children today! And drug companies? Well, there just aren’t enough cases to make it profitable to research childhood cancer. They admit it. But boy have we got restless leg syndrome down eh?


And don’t tell me how research into adult cancers is transferred to our kids. Right now the treatments are “down-sized” adult doses. And the results? 60% of survivors develop secondary cancers, infertility, major organ damage, developmental problems or other issues.


I fight back. I am the Founder of People Against Childhood Cancer. Our mission is to raise awareness of childhood cancer. Join the fight at http://curechildhoodcancer.ning.com. Remember, it could be your kid
AJs Dad of NC
Nov 16, 2008 01:08:41 AM



Please take a moment to let that sink in.




The stats really stink....

Rachel

2 comments:

tae scott-smith said...

Rachel,

I have seen the statistics before, but in the article you added to your posting, it definitely proved profound. I have felt very restless and fiery, especially lately where our friends in similar fights have not had such a "good" outcome as we have. All I can think to do to help make people aware and try to recruit them in the fight is a silly little bake sale to raise money for Ethan's karate fundraiser for St. Jude. We have gone to one speaking engagement since being home, but it still doesn't seem like enough for all the desire I have to get folks to listen. If you have any great ideas that you need help with, PLEASE let me know. I will do whatever I am able to shed light on what seems, at times, to be an invisible war that these children are fighting.

We've thought of you guys so much and are very glad that you keep up your website to let folks know how things are going and how Kevin is feeling. I'll bet you're all looking forward to the Thanksgiving and Christmas holidays and the downtime that will, hopefully, come with it. We're trying to keep everything low-key this year and not fuss so much over gifts and rushing about. I'm glad to not have to go on long road trips for a while. It's still rather novel to be still and stay at home...I know where about half of our stuff is kept now, but that's about as much as I've ever known, so I'm in good shape finally. :-D

Did a woman named Karen Weinburg ever contact yout to get Kevin's story? She had sent us an e-mail about a month ago to aid in her campaign called The Gold Rush, which spreads awareness of pediatric cancers (gold ribbon). She wanted to gather stories and flood the media networks and newspapers with whatever she could gather. If you're interested in checking it out, she has a carepages.com site for her daughter, Nikki. The page name, when you enter the site, is nikkiweinberg. Nikki is 18 (I think) and has had a hard time handling the treatments' effects. Check it out if you like.

I'm off to bed and, with luck, to some solid sleep. Still hit or miss there most nights...I'm sure I'm not alone there. (sigh)

Wishing everyone the best Thanksgiving, stellar health and lots of joy!

Your friend,
Tae

NaKee' Natural said...

Rachel~
Great post!!! I hope this sinks into the hearts of many. We do what we can too: We have the Soap For Hope products. Last year, we raised just $100.00 for CureSearch, small but still something! We all keep working and doing what each of us can, that is the important thing.
Hugs,
Candy