Tuesday, Feb. 26, 2008

Another good day for Hannah. She was at school today all day with no issues. Colby stayed home today, we thought she may have strep throat, but looks like just a bad cold. Hannah was pretty mad that her sister got to stay home and she didn't. I guess she is used to having it the other way around.

Tod came back home tonight-he spent last night at the vet, his time had come to be neutered, so no little Tods will be running around town. When Tod heard Hannah's voice at the vet's office, he started squeaking in his high pitched LOUD squeal from the other room and Hannah noticed it right away. She had tears in her ears when they brought him in. Now we're supposed to keep him calm for a week-HA!

Another reason for my post tonight-the American Cancer Society's Relay for Life. Undoubtedly you've heard about it, it's their nationwide fundraising campaign. I see it on lots of blogs for kids I follow, and online everywhere. So are we participating? Have you wondered why I haven't announced our team name and started hawking for donations? It's not because we don't support cancer research and funding. It's just that our focus is different. We have a child with pediatric cancer. The American Cancer Society, while a wonderful organization, focuses it's donations on the biggest need from the biggest population. That is not children. In 2002-2003 the ACS received nearly $1 billion in donations. From that $1 billion, only $7 million was alloted to pediatric cancer research, less than 1%. Wow. That's low, that is unacceptable.

In my research, I came upon this blog site of a child, Shelby Prescott from Atlanta, that died at age 5 from neuroblastoma-similar in many ways to medulloblastoma. I did verify the facts, and they are good. Rather than paraphrase the information, I am copying the information for you below. Please note that this entry was written in 2006, so these statistics are dated, but still good. I have added some of my own comments to it, I think it says it all:



The American Cancer Society and Childhood Cancer Research Funding

The American Cancer Society’s (ACS) Relay for Life (RFL) is the world’s largest fund raising event in the world with some 4000 events in the US and many more in 7 other countries. More than 2.5 million Americans will participate in this event in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate over $400 million dollars with the expectation that their time and money will get us closer to a cure for cancer. But which cancers will benefit from that $400 million??

There are roughly 100 different types of cancer; each one using different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the ACS budgets their income (donations) according to largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will only be about 12,500 children diagnosed. Also like any other financial entity, the ACS and RFL look for creative ways to promote their cause in order to maximize the inflow of funds.

Gwinnett County boasts the largest Relay for Life in the world; raising approximately $2 million dollars last year by about 10,000 participants. To promote the Relay, organizers search for “Honorary Chairpersons”. People who have battled cancer and survived or are still battling cancer, but are survivors! The Honorary Chairpersons are presented at a large kick off Pep rally with guest speakers, recording artist, testimonials, and all the fan fair. They’re paraded across a stage for all to see who we are fighting for. We want to help these people! At the 2003 Relay, my 4 year old daughter Shelby was an Honorary Chairperson. There were 20 that year - Nineteen children and one adult. Shelby was the youngest. Shelby was diagnosed with the childhood cancer, Neuroblastoma, on November 30, 2001. Only about 600 cases of Neuroblastoma are diagnosed each year. Half of these children will die within 5 years. Since Shelby participated in the Relay for Life, I have learned a lot about distribution of donations within the cancer world.

As I mentioned before, the ACS distributes their funds according to the greatest need or the greatest number of patients effected. According to the ACS’s funding chart for 2002-2003, $132 million was given to cancer research. Only $7 million was given to childhood cancer research. Total donations for the same time period was close to $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides, and many other help programs, as well as fundraising efforts salaries and other executive expenses. One side note, when we tried to get a brochure on programs for children diagnosed with cancer, there wasn’t one.

Anyway, back to distribution of funds. If you had donated $100 to Relay for Life hoping to show your support for the honary chairpersons, $12.47 would have gone to research adult cancers while only 70 cents would have gone to Childhood cancer research. Another way to look at it- Gwinnett RFL’s group of Honorary chairpersons is made up of 95% children but only 0.70% (that’s right, less than 1%) of the donations will go toward childhood cancer research. I think there’s something wrong with this picture. Don’t you?

I’m not trying to get people to stop donating and participating in Relay for Life. The ACS does a lot of good for the adult world of cancer. But if you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations. When Shelby was first diagnosed, the drugs used in her protocol were all “Hand Me Down” drugs developed and tested for adult cancers. Once they went through the 5-10 years of testing to be FDA approved for adults, they had to go through another 5-10 years be retesting and re-approval for use in children. Not one drug that was used in Shelby’s treatment was designed specifically for childhood cancers.

You may think that I’m biased because I’m the parent of a child with cancer, but I also need to tell you that my wife was diagnosed with breast cancer in October of 2005 and her mother died of breast cancer 9 years ago. There is a huge need for funding in all areas of Cancer research, but please take the time to pick the right organization to put your money into. If it’s Breast Cancer research or Colon Cancer research, by all means, get a team together and walk in the Relay, but don’t walk in memory or honor of a child. It will only be a waste of your time and resources.


This article puts into words exactly how I feel about the Relay for Life. I think it's a wonderful event, and would never begrudge anyone from participating. For those of you participating in or giving money to a Relay Team, GOOD LUCK! It just doesn't focus on the same thing we do-funding for PEDIATRIC CANCER. We will keep trudging along with our goals like raising funds for Hannah's Cans for Cancer, and even bigger-getting the Conquer Childhood Cancer Act passed through the House and Senate.

Goodnight all, xoxo Kim

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