Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Wednesday, January 18, 2012

American Cancer Society

WARNING!! SOAPBOX ALERT!!  Please please read this...but I understand if you don't.  If you don't want to read the whole thing just do ONE thing for me...just one little thing.  Consider carefully what cancer organizations you choose to be involved in and donate to. 

So those of you who follow this blog know that last year we went to the American Cancer Society Relay for Life held in our town.  I even donated $25 and signed Tyson up as a survivor and he got a cute little purple survivor T-Shirt.  It was kind of a nightmare.  It was pretty hot that day and they had the survivors inside the high school for a significant amount of the time which was really really nice.  When it was time for the survivor lap, or so we thought, we all went outside and were seated for a nice but looooong program and auction before the lap.  Tyson fell asleep on my shoulder and we left before the lap started.  Even so, I was inspired by the large number of people attending the event.  I thought it was a great thing.  I still think it is an okay thing for adults, it gives them some recognition for the fight they endured, and gives family members an active way to grieve for their lost loved ones.  I will NEVER donate money to that organization again.  I was dissapointed after the Relay to find out that the ACS donates about 1% of their donated funds to Childhood Cancer research even though they often use children in their advertisements. 

Now that I have seen their true views on childhood cancer they are number two on my hate list.  Topped only by the Susan G. Komen foundation who actually SUES other cancer charities who inadvertently use their phrase "for the cure".  Click on that to see the article. 

Let me explain:

When Ty was diagnosed one of the things I started to notice is that the majority of childhood cancer advocacy groups were started by groups of parents of children with cancer.  I, like many other people had no idea there were so many children with cancer.  I assumed all children with cancer were referred to St. Judes and treated marvelously thanks to the many celebrities who support it.  I don't think it is something most people want to think about unless they are thrust into the childhood cancer world so people are largely ignorant about the terrible facts of childhood cancer.  AND they are misled into thinking that if they are donating to groups like the ACS that they were also helping children.  Research on adult cancers does NOT contribute to Childhood Cancer treatment! 

Bald and Beautiful Barbie came to facebook and FINALLY there is something bringing attention to Childhood Cancer that is getting attention from the media worldwide.  We can't get more funding for Childhood Cancer research unless people are actually aware of just how devastating and underfunded it is.  I can throw facts and figures at you all day and make this a much longer article, but for now I will just refer you to places that have already compiled facts like that. You can click HERE if you would like to know more about Childhood Cancer statistics and the percentages of funding Childhood Cancer receives.  About the Barbie, personally I don't really even buy Barbie merchandise so if they make one great, and if they don't that's okay too.  If Mattell makes it and donates some of the proceeds to St. Judes AWESOME!!  The point is, it is getting attention which hopefully will bring more awareness.  Is it really fair that there is pink everywhere when the survivor rate for breast cancer is 99%?  The survivor rate for children is 78%!!!  And most of those children will live the rest of their lives with health problems as a result of the harsh treatment they endured.  The 'medicine' they use to treat childhood cancer causes cancer!!  I'm not allowed to touch Tyson's pills, they are considered hazardous material, yet I have to make him swallow them?? Anyway, I'm drifting off of the subject.

So just to PROVE how ignorant the American Cancer Society really is on Childhood Cancer they released an article about the Bald and Beautiful Barbie. They promptly removed it and apologized the next day after an incredible amount of people responded negatively to it.   Dear American Cancer Society, apology not accepted now that we know your true opinions about how rare and unimportant Childhood Cancer is. You can see the original article below and judge for yourself.  You can read some responses to it HERE.  Personally I am irate that they would belittle the grassroots efforts of an organization trying to help their daughters cope with the heinous effects of cancer. 

Bald Barbie Demand is an Over-Reach
Posted on January 13, 2012 by asbecker
You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,

“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”

To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.

In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.

We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?

The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.

This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.

Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.

My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?

Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.
End of Article

I could go on and on about the awfulness of this article.  It belittles the need for Childhood Cancer advocacy.  We live in a corporate society so if that is a way to raise awareness and funds for cancer research how is that a bad thing?  If there are better ways to attack Childhood Cancer then why hasn't the American Cancer Society done anything to implement those 'better ways'?  The problem is the majority of the parents of children with cancer are financially and emotionally drained and do not have the means to 'attack Childhood Cancer' like your organization does.  Now that we (childhood cancer parents) are finally getting some attention the corporate might of the American Cancer Society is releasing statements against it??  Really???  Do you really believe that a bald Barbie would terrorize young girls??  Wouldn't it instead reduce their fear of befriending their bald classmate?  I would hope that the backlash you received from writing this article will prompt more than an apology.  How about saving the children first?  If we were on a sinking ship wouldn't you put the children on the lifeboats first?  Children with Cancer are on that sinking ship, so why American Cancer Society are you only allocating 1% to them??


  1. Thank you for this information! I had no Idea. Will keep it in mind. could you by anychance give me the names of any good orginizations that do give more to childhood cancer research? Just because I have had people ask and I don't know much about it except from ACS...which I'm starting not to like either...
    Hope all is well and you are a great mother!
    ~Kirstin Latu

    1. Kirstin, CureSearch donates over 97% of their donated funds directly to the Children's oncology group which is why they are my favorite. Tyson is on a clinical trial for the children's oncology group. They do research at over 200 hospitals and have been the leaders in bringing the survival rate up from 10% to 78%. You can find more info about them on curesearch.org. I also love St. Baldricks, Alex's Lemonade Stand, HopeKids, Make-A-Wish, and Camp Hobe. We will be doing a walk in Salt Lake City in September for CureSearch. We are excited to participate in raising awareness and funds for them :)

  2. I've been battling a rare form of leukemia for the last three years. I'm 32. There is no cure for the type of leukemia that I have. I couldn't agree more with what you said. I'm tired of these organizations monopolizing on the pain of children and adults with cancer. I'm a firm advocate of not buying PINK because it upsets me that very little money even goes to cancer research and the money that does go to reseach is used for one cancer only.

    I too fell into the American Cancer Society trap!! My friends and I organized a team that raised $5000 for the Society! However, when I lost my hair because of chemo and wanted to borrow some hats/scarves from the organization I was only allowed to pick 2!! Seriously! 2 bandanas after I raised $5000 for your organization!!!!!! THEY HAD HUNDREDS UPON HUNDREDS OF SCARVES!!! I was told that they had to save those scarves for other patients. My response, "I don't see a line of cancer patients at your door wanting them!!!" GRRRRRRRRRRRRRRRRRRRR

    1. Brooke, I have a daughter named Brooke! Nice to 'meet' you! Cancer is a beast in all of its forms and I'm so sorry you are fighting it! It's unbelievable that the CEO of ACS thinks it is ok to take home over $900,000 a year and they would only give you two scarves! All of those donor funds are basically going back into fundraising expenses and salaries. See www.charitynavigator.org for the breakdown

  3. Amy, I totally just linked your blog to my facebook b/c I was so inspired by this post, I hope that's ok. I'm sorry, I was so inspired that I didn't even think about it until just now, but you wrote it so so well and I didn't want to rewrite it. I'll undo it if I can, if you want.

    1. No Problem Rachel! If only the whole world would read it maybe the ACS would make some changes!

  4. Dear people from Australia, I love that so many of you are hitting this post. How did you find out about it? Somebody post a comment cause I am so curious as to why so many people from Sydney, South Wales are reading?