ROCKSTAR RONAN

It’s a FUCK YOU Cancer kind of day

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Hi. I read somewhere that the government only gives 150k a year to Neuroblastoma research. Ummmm…. how can I find out if this truly is true. You know what they say, you can’t believe everything you read on the internet. Can any of you help me out with this? I seriously need a little research assistant to help me compile these facts.


If this is true, I am going to go ape shit. Here are some facts below that I know are indeed true. We need to use these as ammunition to help against this fight. 

  • Childhood cancer is the number one disease killer in children.
  • Neuroblastoma is the most common cancer in infancy.
  • Neuroblastoma is the most common extra cranial solid tumor cancer in children.
  • Every 16 hours a child with neuroblastoma dies.
  • There is no known cure for neuroblastoma.
  • Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.
  • Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute’s (NCI) federal 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%.
  • 5%-7% of all childhood malignancies
  • about 1 in 6000 children will be diagnosed with neuroblastoma by the age of five
  • The average age at diagnosis is two
  • About 25% of newly diagnosed neuroblastomas are found in children under the age of one

 

I’m on a mission today. I am pissed today. Teddy’s funeral should not have happened. Ronan’s funeral should not have happened along with countless of others that have happened and WILL continue to happen unless some serious action is taken.

This should have stopped yesterday. Time is not on our side in this fucking war.

Where are all the funds these kids need and deserve????? What is going on in this mad, mad world that they are all tossed aside as if they do not matter? If you can purposely be blind to something like this, I question your soul.

FUCK YOU, CANCER.

rockstarronan

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34 responses to “It’s a FUCK YOU Cancer kind of day”

  1. Valerie Avatar
    Valerie

    This looks like a good resource:
    http://fundedresearch.cancer.gov/search/SearchForm

    Reply
    1. Tina (Craig's mom) Avatar
      Tina (Craig’s mom)

      I agree! We need to fight for more research. We were told there were little funds going into NB research. Please read my eBook Cancer~once upon a family”!!! It is our story of dealing with our son’s cancer.

      Reply
  2. Julie Avatar
    Julie

    Research is fav. I’m at work right now, but I will give this my all when I get home. It seems as though the NCI Office of Budget and Finance does not put a specific amount of money on each cancer in their report. Page 46 talks about Neuroblastoma, but the budget on page 56 does not break down the cash. I’ll keep on it!

    Reply
  3. Julie Avatar
    Julie

    check this out http://fundedresearch.cancer.gov/search/SearchForm;jsessionid=A05AB83364ECFAA176FC37CC817FEC0F

    I’m not sure what they mean by “relevant research”

    Reply
  4. Marian (@MarianCutler) Avatar
    Marian (@MarianCutler)

    The NIH gives away about $25 million for neuroblastoma research. The link Valerie provided is a good resource.

    Reply
  5. Meshelle Avatar
    Meshelle

    Seems in line with what Valerie found. The NIH reports about 25 million (still not enough) in funding for fiscal year 2011. 2012 and 2013 have esitmated funding values of 25 and 26 million respectively.
    http://report.nih.gov/categorical_spending.aspx

    Reply
  6. summer Avatar
    summer

    http://report.nih.gov/categorical_spending.aspx. Its sad that the government are all about power and not really helping people out and changing the world for the better. While congress continually gives themselves raises, and they spent all kind of money on wars and all kind of crap that’s not truly important. What can be more important than saving our babies lives!!

    Reply
  7. Philip Avatar
    Philip

    The points you oulined are all perect to copy and paste and add some comments…send to your elected officials…

    Reply
  8. Stacy D Avatar
    Stacy D

    Pulled from the OMB Report Pursuant to the Sequestration Transparency Act of 2012 (page 4)….”The National Institutes of Health would have to halt or curtail scientific research, including needed research into cancer and childhood diseases.”

    Originally saw this http://www.stbaldricks.org/about-us/headlines/view/headline/title/Federal+Budget+Sequester+to+Greatly+Impact+Children+with+Cancer/id/1926/, which led me to look deeper into it.

    Whatever is being set aside is not enough.

    Reply
  9. Sara Compher-Rice Avatar
    Sara Compher-Rice

    I also found the same NIH numbers. What is astonishing is that there was ZERO funding before 2011!
    http://report.nih.gov/categorical_spending.aspx

    Reply
  10. Allison Avatar
    Allison

    I want to fight this!!! Tell me how!! I know so many children I followed on Facebook that died! Roman,Gabby,Jenna,teddy! My heart breaks!! Fuck You Cancer…. It’s war!

    Reply
  11. Melissa Avatar
    Melissa

    Trying to find the amount of funding might be a very tedious task, given how convoluted the government budget process is. One easy way to start is to submit a FOIA request asking for the amount of funding and to which department and agencies it’s allocated. Granted this could take 6 months, it would give you a good idea of the general figures and the agencies associated with the funding. Also, another lead would be to engage your Congressman and ask them to help you with some initial legwork on the research. They should have a staffer specifically for HHS-type issues that can help you navigate the environment. (If they’re not that helpful, remind them that they work for you!)

    Reply
  12. Keri Fredrickson Avatar
    Keri Fredrickson

    Not only are those heartbreaking stats,they are extremely disturbing. I was also guilty of “burying my head in the sand”, until I read Ronan’s story. I think so many people don’t want to think about something as sad as childhood cancer and babies dying. Well, we all need to wake up and do something about this. I think of all of the $ the politicians spend needlessly. Think how many millions should have been spent on childhood cancer research instead. Maya, you have made me realize that something needs to be done. Who am I to say that my children will never get this awful disease? I hope you can have a not too sad birthday and dream about Ronan

    Reply
  13. Glenda Avatar
    Glenda

    I HEAR you RoMama loud & clear FUCANCER!!! this is BS… RIDICULOUS!
    behind you #MAYASMAFIA
    RoLove always xo

    Reply
  14. Sandra Avatar
    Sandra

    Maya, this weekend my daught had my first Grandson Brentley. It scares the hell out of me. Reading your story and knowing this fucked up rickety government we have is so stupid. Do they not realize that the lack of funding is taking away our most precious recource…it isn’t oil or fucking gas…..its our CHILDREN! They are the future….i am posting the link for your petition on Facebook. Is this ok? I am not the best with computers….so I hope it works. There seems to be no reason this war should still be going on. Did you know that they gave 29 Million for lead paint testing last year……and that amount has been the same for 20 years plus……they dropped it this year to 2 million. They should give the rest to Childhood cancer. Yesterday, i was wearing my shirt….it says Imagine a world without cancer. Save our children. I was at McDonalds getting food for my daughter. The young man behind the counter said “I can’t imagine” I said I can…….he told me he was sorry that i put my faith in it. I walked away before I punched him. That is what we are up against. People who can’t imagine so they do nothing…….you made me open my eyes. I say its time to open the worlds! So fight on Romama…..you have an army. We are here and we hear you! Xoxo sandra

    Reply
  15. beckee Avatar
    beckee

    “There is not a GIANT step that does it. It is a lot of little steps”. I read that on Pinterest. 🙂
    Anyway, I am here to take all the small steps with you.

    Reply
  16. dtine33 Avatar
    dtine33

    yes these statistics piss me off – and after learning about them, and reading about the beautiful kids that keep dying to this beast called cancer – I can’t help but join in the fight. I also want to question all the people in my life that tell me I talk to much about this (apparently since I DON”T have a kid battling cancer people find it weird that I care – SERIOUSLY!!!!!) – that tell me it’s too depressing and why do I read this stuff – blah blah blah – I just want to ask them how can they put their heads in the sand?? It makes me so angry. What happens if someday my son gets diagnosed, or someone else that is close to them – is that what it will take for them to care??? I don’t wish this on anybody….but I do wish people could just understand how important this fight is and how selfish and small-minded it is to ignore it.

    Reply
  17. Jeanette Avatar
    Jeanette

    And the federal government gave half a billion tax payer dollars to planned parenthood! Seriously?!?

    Reply
  18. Paula Avatar
    Paula

    Maya,

    I don’t know if this is outdated information but I found the website listed below, which also has a pre-written letter that people can send to their representatives in Congress. I’ll keep looking for info. I hope this is helpful.

    Paula

    http://www.neuroblastomacancer.org/write-your-representatives.php

    Reply
    1. Elizabeth Avatar
      Elizabeth

      Paula, Thanks for sharing that. I’m going to use it and mail to my representative. Everyone on here needs to do it! It’s quick and easy! 10 million hits is a lot of letters!

      Reply
  19. Leah Avatar
    Leah

    I got $39,317,116.

    Reply
  20. spreaderofawesomeness Avatar
    spreaderofawesomeness

    https://petitions.whitehouse.gov/petition/find-cure-little-known-childhood-cancer-killing-kids-we-need-cure-neuroblastoma-now/wBNrFDtX?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

    Sign this for Juliana’s cause, please. Hurry. She’s running out of time.

    Reply
  21. Whitney Avatar
    Whitney

    Maya, I signed the petition and shared it on Facebook. I also copy and pasted the facts about Neuroblastoma as my status on Facebook, hoping that someone will share and take notice. Monetarily, I am not able to do much, but am more then happy to volunteer my time. I am a 32 year old mother of three and want to help you fight this and find a cure. FUCK CANCER!
    Please email me and let me know what else I can do!

    Sincerely,
    Whitney L.
    gracesmadre@yahoo.com
    Edmond, OK

    Reply
  22. Chelsea Avatar
    Chelsea

    Fuck you cancer!!!!! These statistics disgust me. And to think we as a country spend so much money on other worthless things, it makes me sick

    Reply
  23. Kelsey Knutson Avatar
    Kelsey Knutson

    Just this morning i was discussing the numbers you posted here with an older woman at work. How ridiculous it is that they just dont seem to care enough for the future to save these kids. How blood test should be routine not something you have to beg the doctor for. I too became a fan of your blog after seeing Taylor perform that beautiful heartbreaking song. I follow your blog continuously espically when im having a bad day, it reminds me of how precious life is, whats really important and how lucky i am to have my son healthy and here with me. Reminds me not to sweat the small stuff, and at the end of the day its all small stuff. I admire you for your strength and your fiestyness and i enjoy reading and learning from you although i wish that your blog didnt exist under the conditions it does. I shared at work with my co-workers your story, showed them the pictures of your beautiful son ( they refer to him as the one with the most beautiful eyes), and read to them as well as to anyone who would listen your how to live like a rockstar. Alot of times when id share stories like yours people would often tell me to stop reading its too sad, that i wont enjoy my son if i spend my time reading about other peoples tragedies. If i stop reading these stories will kids stop dying? NO! im well aware its depressing to hear of kids dying whether it be from cancer, heart disease, car accidents etc, espically from something that should be curable. If they have come so far in the war on breast cancer why havent they come as far for these kids? unacceptable!,to me if feels wrong to go about acting like i dont know ignoring the facts to me thats silent approval and NO i do not approve of kids dying. I also don’t buy the its Gods willl what can we do? First no its not Gods will for parents to bury their children, and what can you do? you have a dollar? donate it! you have a voice? use it! speak up for these kids that cant. We cant just sit back and allow this to happen, we can’t say its Gods will and leave it up to God, we need to be the change we want to see.Knowledge is power. My best friend got me into donating blood, I told her how we should also sign up with be the match to register for bone marrow donation. She on the other hand was not so thrilled on the idea, little did we know that a bone marrow transplant could save her daughters life. Last month her 2.5 yr old was diagnosed with leaukemia. Walking through the halls of the childrens hospital an overwhelming feeling of guilt came over me. It made me upset that this is happening meanwhile us on the other side can only think about money and materalistic bullshit. About how my job is so pointless and we worry over the simpliest of things. Im not a doctor so i cannot cure them, but im not a mute either so i will make my voice be heard to those who will listen, for Ronan for Oriana for all these kids that deserve a fighting chance. I will continue to share your story and rock my Ronan bracelet to raise awarness, And of course i signed the petition to brighten up that white house this coming septmeber..Stay strong Mama your an inspiration to many. Much love and respect to you.

    Reply
  24. Elizabeth Avatar
    Elizabeth

    Maya or anyone, where can we get the FU Cancer bracelets?! I really want some. I saw the nice version on Palmer Cash. Thanks for your help!

    Reply
  25. nadine Avatar
    nadine

    The same thing here in tiny BELGIUM…..no big funding for more research and no interest from farmaceutical companies since it is a too rare cancer in their eyes!!!
    FUC
    FUC
    FUC
    Nadine from Belgium

    Reply
  26. julianawaterbury Avatar
    julianawaterbury

    Maya I hear you! Out of 149 friends only
    3 have acknowledged the petition. I seriously want to delete them all! How lazy and selfish people are.
    But I did write to the commissioner of the NFL this morning 🙂 maybe someday our football players will be adorned in gold for all of September.

    Reply
  27. Julie Avatar
    Julie

    First of all these numbers seem manipulated in many ways–the NIH distinguishes between reasearch dollars and “relevant research” and does not explain the difference. Per NIH numbers, neuroblastoma gets about $25 million and while that seems like a lot of money if you compare it to breast cancer–$625 million and prostate cancer–$288 million, its a drop in the bucket. The NIH likely justifies this amount based on the number of cases diagnosed each year. One parents’ child dying is ENOUGH. It is unacceptable to base reseach solely on numbers.

    I agree with the other comments, start writing letters, signing petitions. If everyone on this blog would do something, things would change. We are the people–vote, use your power!

    Reply
    1. S. Avatar
      S.

      most likely, the distribution of funds is due to the percentage of illnesses happening to people. as pediatric cancer accounts for less than 3% of cancers, per government statistics, the pediatric cancer research receives the percentage of funds accordingly. this is sad, very, very sad. and as the drugs used for kids will have to be tested and tried first on adults, it takes much longer to get medicine approved to be used in pediatric cancer, as doctors want to be rather sure of all side effects known and of the effectiveness of any given cancer drug. mostly, pediatric cancer therapies are same as adult, but lesser dosages.

      as adult cancer patients can and very often like to participate in trials and experimental drugs, parents of kids suffering from cancer are rather cautious, understandingly, and would like to see medicine given to their kids proven to have worked on earlier trials.

      my heart goes on and on, Maya, and a rare day goes by that i do not read your blog. i posted Ronan’s story, as well as Ty’s story in my own journal, in russian language; i did the same on a russian–speaking forum, for russian-speaking moms in the states.

      i just signed the petition, i found a link to it on Cindy Campbell’s site.

      Reply
  28. julianawaterbury Avatar
    julianawaterbury

    I always post on here but never see my comment..weird 😦
    Well hopefully this one posts…..I wrote an email to the commissioner of the NFL this morning. Once we’ve reached our goal at the White House, lets get those players suited up in gold. I will keep posting the petition until the deadline. My fb friends need to step it up!

    Reply
  29. Brittany Avatar
    Brittany

    Maya,

    Somebody in the December 2012 birth club on babycenter.com just received the news last week that her one year old child has neuroblastoma. I am so beyond sickened that children continue to be diagnosed with this asshole of a disease. I gave her the link to your blog hoping that she will be able to get in contact with you.

    Reply
  30. MsL:) Avatar
    MsL:)

    Hi Maya,

    I just want to say thank you for sharing your life with all of us. I have been reading your blog for a while now and have cried many times listening to Taylor’s Swift song about Ronan and reading your entries. You have opened my eyes to embrace more what is important in my life and I have been living a bit more each day. I find you to be a very courageous woman who is making a global difference towards childhood cancer. I am now going to target my friends in Australia who know people in the states to start signing that petition, I’m also going to hit celebrities websites to start spreading the word, since I can’t sign.:(.

    remember every drop of rain makes a river and every river leads into the ocean. Nothing is not possible with this petition.

    Love L xxxx

    Reply
  31. Melissa long Avatar
    Melissa long

    Hey I was hiking one day and found a fuck you cancer rockstar Ronan bracelet and have been wearing it for the past two years. Today I lost it somehow at work. I was hoping you’d be able to send me another?

    Reply

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