Here is some info from my Little, Rachel in NYC. Thanks, Little. Love you.


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Here you can see what the NCI funded, they spent a total of 23 million on neuroblastoma research. Their 5.07 BILLION dollar budget in 2012 went mostly to breast, prostate, lung, colon…
In millions. NIH funded $0 from 2008-2010. Then in 2011 they gave 25 million, 2012 26 million and are projected to do 25 million for neuroblastoma research in 2013
Government CUT funding to Children’s Oncology Group, the largest children’s oncology group in North America which supports the clinical and biological research at over 200 participating institutions and treats about 90% of the children with cancer. COG received less than half of its requested budget from the federal government this year. UNACCEPTABLE.
3. AMERICAN CANCER SOCIETY: In 2010 directed $0.01 (a penny) to childhood cancer research for every dollar of public support.   (Total expenses: $951,123,000 and total directed at childhood cancer research: $11,900,000. Source:ACS)
4. LEUKEMIA & LYMPHOMA SOCIETY: directed $0.02 to childhood cancer research for every dollar of public support. (Total public support: $287,625,000 and total directed at childhood cancer research: almost $6,000,000. Source LLS)
If GOVERNMENT looked at cancers based on YEARS LOST as opposed to amount of people diagnosed…
Person-years of life lost (PYLL)—the years of life lost because of early death from a particular cause or disease. PYLL caused by cancer helps to describe the extent to which life is cut short by cancer. 
The average age of diagnosis for childhood cancer is 6.  Therefore, each death after five-years (age 11) from childhood cancer represents a loss of 61 years of productive life (72-11=61).   The average age at diagnosis for breast cancer is 61 and each death after five years represents a loss of 6 years of life (72-66=6).
  1. Breast cancer, with 275,000 total life years lost, receives $599.5 million, or $2,172 per year life lost.
  1. Childhood cancers, with 205,008 total life years lost, receives $192.8 million, or $940 per year life lost
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49 thoughts on “Here is some info from my Little, Rachel in NYC. Thanks, Little. Love you.

  1. Macie H

    This makes me want to vomit, and then go yell at the people in charge at these organizations. Totally unacceptable.

  2. Mary Ellen

    I heard on the news that men’s cancer numbers (esp colon) have dropped dramatically…that’s great – now, let’s focus on children.

  3. daisymaydorr

    I personally think that one type of cancer shouldn’t be more important than another type of cancer. I think they should all be funded equally. I also think that any an every life is important to try to save. However I would pick a child life more than an adult. Unless it was a single parent. Children can’t live without their parent if they have no other family. So I think that it is bullshit to say one life is more important than the other. People related to a woman who has died from breast cancer think that is important to cure.meaning that not one type of cancer should not be more important than the other. If people think that then they have their head stuck up their ass. Millions of people all different ages die from cancer all the time. Its rude to say that one type of cancer should get more funds an research than others. Its not right that people say that there should be more research done on something that no one can fully understand. Millions of people go untreated for cancers for many different reasons. You should be lucky if you or your family have gotten treatment an got to live a little longer. What about young children with mothers or fathers dying they have to watch them suffer. I frustrated that everyone thinks that their cancer that has effected their family is more important than others. I call it selfishness. If all of humanity was like this then nothing for any cancer would be done. You also have to understand that you are not the only one. Yes your child is dead from cancer but so are many other babies from different types of cancer. You also have to think that working Americans are paying for this research so you should be greatful that there are people out there that are helping an researching this. Maybe if you got your head out of your ass an looked around you would see that your not the only one. You basically said that everyone else’s cancer is less important. In real life not just in your head everyone’s cancer is important. Not just yours. I think its very rude of you to be bitching about funding when you have a charity. There’s a lot of people who needs help now for cancer where is their charity. People don’t seek potty on them just because they have a blog. Yes your child die but what about the children dying right now that your saying don’t deserve the funding what about women who have breast cancer that are dying infront of their kids or do you not care a out any other cancer than yours. Wake up your cancer name type whatever is still cancer. Cancer all types should have more funding an all lives no matter age sex or type should have more research and funding no just yours. Your whining an crying aren’t helping you any. Wake up an do something not just tell dying people that they don’t deserve a cure. You truly sicken me as a mother of a child who had cancer should be a little more respectful to those who have cancer now. Your not the only one stop acting like a selfish brat an do something good for your cause an all the other causes out there your cancer is not the only one an how dare you act like it is an bitch because others are getting funding. You ate truly heartless an cold

    1. rockstarronan

      crack is whack. I never said that. I reposted it from someone. Please go away. You misunderstood and made a totally crazy assumption. I’m fighting for these kids because they do NOT have a voice like ADULTS do. Asshat. If you have an issue, go start your own blog.

      1. daisymaydorr

        I’m not on crack I simply voiced my opinion. And you don’t like that. Too bad tour shouldn’t have your shit out in.public if you don’t like peoples opinions. An I never took it to the immature level of a three year old by name calling.

      2. daisymaydorr

        You know what you deserve everything bad in your life. Your acting like a three year old. I.was voicing my opinion. Its called freedom of speech. If you don’t like it keep your shit of the web. You selfish ugly dumb bitch. If you don’t like it you can kiss my ass go smooches money off more people while others are dying

    2. talize

      How could someone be considered heartless who is fighting to cure childhood cancer? She is not saying that other cancers should be ignored- she is saying that children need a VOICE and an ADVOCATE to get more FUNDING for their cancers! She’s not choosing one type of childhood cancer over another- she is fighting for childhood cancer in general. If even half as much time was spent on childhood cancer awareness as is breast cancer, for example, there would be so much more funding and help for all these babies who are dying. Breast cancer does need support- but look at how much attention it is getting! Don’t other cancer victims, particularly ones that are CHILDREN deserve to have attention focused on them as well? I think the work you do for childhood cancer is amazing, Maya. Keep up the awesome work! We need so much more attention focused on childhood cancers to find a cure!

    3. Colleen

      Pointing out the inadequacy in funding between childhood cancer research and breast cancer research is not asking for special attention – it’s asking for equal attention! I agree all cancers should get equal funding… maybe the ones who affect more people should be given the most attention first so we can cure more people but that includes many childhood cancers as well and does not mean others do not deserve funding. My position is basically that research funding should be based on need not marketing like the breast cancer stuff. People are afraid to talk about childhood cancer but we should talk about it and advocate for more awareness and funding. These kids deserve to live too. Pointing that out does not mean she is minimizing the suffering of adults with cancer, it just asking that kids with cancer be supported, too. We have made a lot of strides in childhood cancer research but we still have a long way to go!
      BTW Maya, I first heard about your blog thanks to Taylor Swift (I am a huge fan). As a childhood cancer survivor and future doctor I was touched by reading from the parent’s perspective. I am so sorry for your loss 😦

    4. Sparky McSpark

      Daisy Duke, you clearly missed the sign at the beginning of this post. It says no assholes allowed, so how did you end up here? If you don’t support Maya’s cause, get the F off the page. Oh and grow up and learn to spell and get yourself some grammar lessons (i.e. your vs. you’re).

    5. Sadie

      Daisy darling, do us a favor and read the blog entry again. Your reading comprehension and ethics are embarrassing.

    6. alibeeee

      The biggest point here? Why should parents whose children have died be responsible for raising the money? Why isn’t childhood cancer funded by the government as much as other cancers?

    7. Stacy

      It’s one thing to “voice” your opinion, but it’s another to banter somebody else for theirs. She is simply stating a fact and never not once has said that one cancer is more important than another. Her focus is on nueroblastoma because that is what has affect her and her family. It’s not your right to tell her how she should feel. It’s basically like many mothers teach, if you have nothing nice to say, then don’t say anything at all. It’s obvious that you have never lost a child, because if you had, you would have been as cold hearted as you were. You cannot call a grieving mother a selfish brat. She is far from that. All people cope with loss in their own way. If you don’t like what she has to say, then simply don’t read it.

  4. deanlv

    Yes it is unacceptable, but that is why what Maya is doing is so very important. Just like breast cancer has become a part of our collective conscious, we have to make pediatric cancer just as exposed and even more reviled. Only when people see how it impacts others do they act, and this has been kept hush hush for far too long because people don’t know how to talk to parents of children with cancer.

    Thank you Maya, your strength and love for Ro and the other children afflicted will help tip the balance and forcing those in positions of power into action.

    Maya… I know that you won’t get your wish for your birthday, or what you wish for every second of every day you wake up, but your love is what has gotten you through so far, and it is what will be the reason more is done to find better treatments and eventually a cure for pediatric cancer.

  5. Jennifer S

    Looks like she got that from this site: http://curechildhoodcancer.ning.com/forum/topics/so-where-does-the-money-go. The author admits it’s his analysis and experience of the data. Not to say that he’s wrong or that more money doesn’t need to be spent on childhood cancer ( one of my daughters had surgery and chemo for cancer when she was 3 and 4) and a strong motivator is awesome. If you look at the NIH site you’ll see lists of grant opportunities. Who’s applying? Who makes the decisions? My thought is that researching all sides of the issue would be wise before making assumptions. Having said that, I will make the assumption that Daisymaydorr didn’t make it past 4th grade.

  6. Krystal

    I am here to help in every way I can. I agree that our children are the most important because one they have not had a chance to live yet and two they did not do bad things to their bodies to get this monster. More times than not adults do things like smoke which causes cancer and even smoke around their little ones, but children just get cancer from no known cause so it cannot even be prevented and we must fund the research to stop it from taking our babies, our futures.

  7. Tiffany (@drealities)

    Daisy, allow me to help you out a bit. 1) AND is the word you’re looking for, not AN. The word “AND” joins two thoughts together, dumb fuck. 2) “Your” shows ownership so if YOU’RE calling her a name then you should use “you’re.” Those are just the two grammatical errors that made my eye twitch; trust that I could point out fifty more without breaking a sweat.

    The fact is that childhood cancer is severely underfunded and it KILLS every day, but luckily for you, stupidity doesn’t or you’d be FUCKED!

  8. Meg

    Wow, this is insightful. And to the negative commenter – all Maya is doing is bringing attention and awareness to the lack of funding for neuroblastoma. She is using her pain and loss for good. Direct your anger elsewhere, this isn’t the forum to be critical…

  9. Kim Fearon O'Connor

    Hey Daisy, when is the last time you saw a commercial to raise money for childhood cancers? (notice i said cancers…Maya is fighting for more funding for ALL cancers that affect our children, not just neuroblastoma). When is the last time you saw the NFL wear gold to raise money to save the children? When is the last time you went to the grocery store and saw advertisements on products to fund childhood cancer research? I’ll tell you when…NEVER! If you would get your head out of your ass long enough to actually READ what Maya writes, she is fighting for awareness and funding for numerous childhood cancers and diseases that steal our innocent children too soon. She has NEVER said other cancers should not be funded. And honey, with your insults and poor grammar, you were already well below the level of most people on this blog. And I side with Tiffany’s comment….you can’t fix stupid.

  10. smilesforcole

    I’m not afraid to talk about Childhood Cancer. My son Cole who died from neuroblastoma cancer at five years old on 1/20/12 was not afraid to fight it, so why should I be afraid to talk about it? I want to scream about it! Cancer screwed with the wrong parents of our precious kids this time. I promised Cole something big in his memory, and I decided getting Gold in September as big as pink in October is, was the “something big” I was going to do for him. It will happen! I will not break my promise to my son Cole. For Cole, and Ronan, Jessie, Alexander, Lance, Ryan, Charlotte, and all of the hundreds of other beautiful kids I have seen die, “There will be Gold in September!” We promise

    Tony (Cole’s Dad)

    http://www.facebook.com/yellowandgoldforcole

  11. Kara

    Mean People suck!!!
    And you can’t fix stupid!!!
    But together we can cure childhood CANCER!
    For Ronan and ALL the other babies fighting!

  12. Stacey

    Daisy is a douche.

    ACS doesn’t like to be outed. They finally blocked me from their main page and their Relay For Life page because I kept posting the information you provided (along with information about their ridiculous 28% overhead, which includes their CEO’s $2.2 million salary).

    Here’s some “interesting” information:

    http://www.charitywatch.org/articles/eyepoppingpay.html
    http://mobile.bloomberg.com/news/2012-09-12/charities-deceive-donors-unaware-money-goes-to-a-telemarketer.html

    1. Laurie

      Wow that is eye opening, terrifying, horrifying and disgusting information. I did not know such a large portion of the money given to ACS was used this way. This is appalling and something needs to change. Those millions of dollars could be the dollars that helped fund a study that, in the end, could have saved thousands of lives….including precious Ronan’s. #FUC

  13. Kimberly

    1) Since there is strength in numbers, is there a way to create a non profit organization that links all these groups that parents and loved have started to collaborate funds? 2) it might be a good idea to try and do a press release in papers and get some facetime on tv in sep (childhood cancer month) how much these different charities, that people donate to, spend on childhood cancer. That being said, I think equally important is education, prevention, and other types of support for families with kids that have cancer, which might not be easily reflected in that stats?

  14. Natasha K

    Wow…anyone who attacks someone who has started a Foundation to fight cancer, and says they need to get off their ass and do something besides whine (wtf? really? – back to the started a foundation part) AND says they deserve all the bad in their life, (basically their CHILD DYING)… I just think there is a special place in Hell for those miserable gremlins. Daisy advice you miserable soul – stop reading this blog and like Maya said, start your own, and make your own Foundation, and you go girl. Everyone can be a critic but it takes doers to get it done so YOU stop whining. Or you can just be the Debby Downer and Negative Sally and that’s your lot in life. Good luck.

  15. Ariana

    Difficult to find childhood cancer shirts or car magnets anywhere online or at stores, in nothing but a sea of pink breast cancer shirts. Watching NFL football players wearing hot pink for the entire month of October. All I hear on the radio is about the 3 day long breast cancer walk.

    I get that every cancer is important, and have had relatives die from many other types (pancreatic, lung, and breast.) I also just want equal airtime for childhood cancer and I don’t see it at all. I don’t think that’s selfish at all in any way. Are the breast cancer or lung or prostate cancer people selfish for fighting for their cause?

    I am going to donate more tonight to The Ronan Thompson Foundation for Daisy’s behalf…

  16. Sarah

    I just read these to my mom (who just happens to be a breast cancer survivior) and SHE is livid with these numbers! This is ridiculous and so is the fact that Ronan can’t be here..or Teddy..or Ty. Where are these kids? They deserved so much more. I am 17 and applying to colleges now. I want to be a pediatric oncology nurse. I just have to help these kids. I fucking wish Ronan could have been one of them, it would of been an honor to know this special little guy. He should be here. He is probably happy where he is but not as happy as he should be with you, and his dad, and his brothers. These kids deserve so much more and I can not wait to get involved and get something fucking done about this disgusting mess. Fuck cancer and what it has done to Ronan and you and so many others.

  17. Kodiak My Little Grizzly

    I blog… I’m shocked someone could be so hateful… and for what… If you don’t like it then don’t read it… sheeeeesh! makes me scared for my blog… Oh! wait… that’s why I have to approve them… but that doesn’t mean I couldn’t still read them… Thanks Maya for exposing the hate you get… I’m sure you probably see more.. and then just delete the crap? But this one should be a wee bit embarrassed for the hate showing up so publicly… Hmmm!!!

  18. Michell

    I have a hard time understanding why so little funding goes toward childhood cancer. Not to downgrade the gun violence but if childhood cancer got the attention this issue is getting real progress could start being made. Kids lives are disrupted by cancer daily. If the government would put the money behind cancer research that they have put behind alternative energy there could already be a cure. I hate the suffering of anyone at any age from cancer but a child is too pure for such a hateful disease. I know you will keep fighting and staying true to this cause!

  19. Jennifer Massaro Derocher

    So it seems like NCI raises A LOT of money for cancer. who can we work with there to redirect their funds to Pediatric?? I think their funding will keep coming in, so what about building alliances with them, raise their awareness to the needs of Pedi and see if something can be done. has anyone tried this yet?

    1. Stacey

      Jennifer, NCI is federally funded, meaning their budget comes from the federal taxes, not donations. There was a bill passed in 2008 to focus more on pediatric cancers, but nothing more came of it. TheTruth365.org has some more information about this, and has created numerous petitions to get more of NCI’s budget for pediatric cancers and to appoint a pediatric cancer specialist to the National Cancer Advisory Board. So far, each petition has expired without the 25,000 signatures required for Congress to review it, but they’ll be creating new petitions soon.

      Non-profits like American Cancer Society depend on public donations. ACS gives just 1% of all public donations to pediatric cancers. 15% of donations go to adult cancers, 7% to administration (including the CEO’s $2.2 million salary), a whopping 21% to fundraising (in 2010, 21% of donations was $202 million)), etc.

      Just an FYI. 🙂

  20. Amanda G

    You are all amazing fighters!! Maya, what you do is beyond amazing and I can only hope to ever accomplish 1% of what you have in such a short period of time. Cancer SUCKS! Please, please sign this petition; I am trying to get the NY Giants 5K Run to fund pediatric cancer this year– last year they had over 3000 runners, this could be huge!! http://www.ipetitions.com/petition/kidsgetcancertoo/

  21. Naveen O'Sullivan

    I really don’t think the problem of treating childhood cancer is lack of funding or awareness. Billions of dollars have been donated to childhood cancer research. I really believe the problem is due to the fact that childhood cancer is rare. Therefore, it would not be lucrative to find real and humane treatment for children suffering with the disease. Research foundations and pharmaceutical companies would lose millions of dollars each year if a cure was found.

    At any given time there are about 300,000 women walking around with breast cancer as compared to children with cancer, I believe is about 15,000. With breast cancer, there is still a lot of money to be made treating the disease, with children, there isn’t.

    And children basically just get the hand-me-downs of treatment and research for adults, which is totally unacceptable. Adult treatment for children is so unbelievably inhumane. Their cancers are different and so are their little bodies. Which is why so many children end up dying cancer free but dying from adult treatments that have ravaged and tortured their tiny underdeveloped bodies.

    IMHO, it is completely normal that cancer mommies are outraged by the lack of proper treatment for their children while adult cancers are getting real solutions. It may come across to some that they are against attention and funding for adult cancers. I just don’t believe that is the case. I think there are a lot of cancer parents that are desperately trying to get the SAME attention, not more and not less.

    And let’s not forget, these children didn’t “just” die, they suffered through unbelievably hellish treatments that would make the torturers at Guantanamo Bay jealous.

    Cancer is a business and it’s all about the bottom line. And because of that, children are suffering and dying. It’s hard to come up with enough adjectives to really convey how immoral and inhumane the business of cancer is to children.

  22. Jenna

    HOly shitballs! this your blog for your Robaby!!! I never would have even of known about how many children are succumbing to this horrific disease if it was not for you! YOu were just merely saying the statstics of how much less pediatric cancer was getting! Yes, we still need to keep funding out to other cancers, but the main importance of THIS blog is what Maya is working on and that is AWARENESS! Everyone has a right to their opinion, but if you do not have anything nice to say, then don’t to a grieving mother who is fighting like hell for parents all around the world for a better option and cure. when her child is gone from M’fen cancer. She is still fighting for what is right! We all have something to fight for her and Maya’s is funding and awareness for Pediatric Cancer!! Fucking Roar Maya! Asshats are not welcome here!!

  23. Twinbaby

    These numbers are a little misleading for numerous reasons. First, one type of cancer funding in comparison to a grouping of cancers will always be lower. Second, cancer effects everyone differently, and in return, usually based on their own personal experience will donate to the cancer that directly effects them. I donate to all types of cancers, but I will admit that I donate more to the cancers that have stricken both of my parents. Does that make me a bad person? I hope not. The more common the cancer, the more people effected, and the more funding raised. What people assume is that funding goes to research. When you look at the division of profits, research is a very small portion of allocated funds. Most of the funding goes to education, future fundraising, screening and medical costs of those who can’t afford treatment. When looking at a group of cancers such as breast, lung, colon and prostate (as listed in the original post), it effects a much larger percentage of the population. In other words, that $5.07 billion can actually end up being spread very thin when looking at the number of those effected and the medical costs associate with it.

    On a more positive note, funds raised for lung, breast, prostate and colon cancer contribute greatly to advances in the cancer world in general. Take a PET scan for instance, the medical invention of the year in 2000. It is not cancer specific, it works for all cancer patients. We are having breakthroughs in cancer research all the time, and it can only benefit the cancer community as a whole. Treatments are crossing barriers. The Melanoma community, which is highly underfunded and has very limited treatment options, is now seeing a break through with a lung cancer drug, and there are many examples of this. There are cases of neuroblastoma stabilizing in patients that were on a treatment intended for lung cancer patients. To the original poster, it will do us no good to shift the blame or call funds to any type of cancer b.s.. If the cancer community as a whole joined hands we would have an army of millions to demand solutions from the government.

    No one should die of cancer, and certainly no baby. There is too much promise there. Our government needs to step up. We have our own war right here in the U.S. in the form of millions of cancer patients.

  24. Angie N.

    WOW!! I just left this comment on another one of Maya’s posts:

    The statistics in your last post are un-f-ing acceptable! What else can we do to help?? How do we get those agencies to listen, and give pediatric cancer the funding it deserves??I so agree with a comment you made once about all of the pink shit for breast cancer and giving all the little girls the chance to even grow up and worry about breast cancer. It only makes sense that pediatric cancers should receive the most funding… why doesn’t that make sense to everyone else? Seriously, what else do we need to be doing to get people to listen? I signed the petition to turn the white house GOLD, signature #6060 but I want to do more!

    Then I see the bullshit posted by daisymaydorr!

    Let me tell miss daisyfuckingmaydorr something….. I have lost 4 family members and a friend to breast, stomach and prostate cancer, not one of them was to childhood cancers. BUT, I still believe childhood cancer should receive MORE funding for research and cures. The point is that while everyone is throwing their hard earned money at agencies like American Cancer Society and such, they are hardly giving any of that money to research, it’s all about profit and a bottom line for them. How dare you attack Maya and her cause you are not in her shoes… get a fucking life and get the hell off here daisyfuckingmaydorr!! Nobody wants to listen the shit running out of your mouth! And for your information Maya is moving moutains in raising awareness for pediatric cancers… what have you done lately in your fairy tale world?

  25. Bluejellybeans

    OMG! I can’t believe there’re people like that in this world (well, I know they do exist, but I wasn’t expecting them to do and say this kind of things…)
    You know you are doing a good thing, don’t pay attention to this horrible “person”.

  26. Allie

    Maya,

    I have been reading your blog for several months and it has really brought a new awareness of the devastation of childhood cancer to me. I feel like I’ve learned from you, and you’ve also made me more grateful for the blessing of my own family’s health.

    But I have to comment to say that I found calling the funding for breast, colon, prostate, and lung cancers “bullshit” really hurtful, when those cancers kill over twenty times as many Americans per year as all brain and nervous system cancers (http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf). The PYLL figure is a different (and of course heartbreaking) way of thinking about things, but I personally find it problematic, as it values one human’s life against another. In my opinion, life lost to cancer is death we have to fight as a country and as a species.

    I want to fight alongside you, but I feel the advocacy message is so much stronger when we don’t pit cancers against cancers or young victims against old victims (which I know isn’t what you mean but what I feel these messages suggest) and instead try and advocate for increased federal spending on cancer research overall, increased spending on childhood cancer research, increased attention to childhood cancer at the federal level (such as, why isn’t pediatric cancer its own category in this NIH table: http://report.nih.gov/categorical_spending.aspx), and increased overall awareness.

    The folks in the comments section discussing the giant amount of attention paid to breast cancer — that’s the result of years and years of grassroots advocacy, starting with the families of breast cancer victims who saw the lack of attention being paid to breast cancer and wanted to do something about it. Maya, I hope that yours is one of the families that turns attention toward a cure for childhood cancer. I just think that you will be better served by advocacy messages that do not belittle the devastation of all cancers.

    1. LB

      All cancers are horrible. You have a good point and made that point very thoughtfully. Thank you for this information! Let’s eradicate all cancer. All of it!!!

  27. novoline spiele

    Hmm is anyone else experiencing problems with the pictures
    on this blog loading? I’m trying to determine if its a
    problem on my end or if it’s the blog. Any responses would be greatly appreciated.

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