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The Leavenworth Times - Leavenworth, KS
  • Q5: Local woman aims to raise awareness of childhood cancer

  • Joelie Berres is a local advocate for raising awareness of childhood cancer.
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  • Joelie Berres is a local advocate for raising awareness of childhood cancer.
    1. Joelie, can you tell us how you became interested in raising awareness of childhood cancer and why it is so important to you?
    I knew that children could get cancer, but it wasn't until September of last year that I became aware of the facts of childhood cancer. I was going through my news feed on Facebook and someone had posted a page called, "Thumbs up for Lane Goodwin."
    He was a 13-year-old boy from Kentucky who was battling Rhabdomyosarcoma. As I was going through his pictures I came across one that changed my life forever. He was sitting up on a hospital bed they had set up for him at home, and his grandmother was sitting next to him feeding him soup.
    They were looking directly into each other's eyes with so much love and hope. And my heart just broke. Here is a young boy who should be outside playing and going to school. Yet he is home sick and so weak that people have to help feed him.
    And then I came across other pictures they posted with facts about childhood cancer and I was shocked to learn how little funding there is for these kids.
    A month later, on Oct. 17, Lane lost his battle to this monster, and I was forever changed. I then became attached to a 5-year-old boy named Thomas J. who had brain cancer.
    His smile melted my heart. He wore an eye-patch, because when they had the tumor removed one of his eye started to turn inwards.
    So they alternated the eye-patch hoping it would strengthen his eye.
    Then his parents decided once the treatments weren't working to take him home for his final days, all the while still praying for a miracle. Thomas J. passed away May 26, 2013, after a two-year-long battle. I got depressed after hearing the news.
    My heart ached for his family. Here is a boy who I've never met or spoken to and I was crushed by his passing, I couldn't even begin to imagine what his own parents were going through. I had to step away, but not long after I couldn't.
    These kids and their parents can't just step away when it gets to tough, so why should I? So I made a promise to Lane and Thomas, that I will not be silent and forget them. That I will speak up about Childhood Cancer.
    2. What are the statistics on cancer research funding in general compared to the funding that goes specifically for childhood cancer research?
    Let's just say if you were to donate $100 dollars to Relay for Life hoping to show your support for the child honorary chairpersons, $12.50 would have gone to research adult cancers and only $0.70 cents would actually go towards Childhood Cancer Research. The National Cancer Institute's (NCI) federal budget was $4.6 BILLION. Of that breast cancer received 12%, prostate cancer received 7% and only 3% of goes toward Pediatric Cancer research. Thats 3% of ALL kinds of Pediatric Cancers combined! Here is a complete summery of the funding.
    Page 2 of 3 - Hospitals: it may be difficult to determine what percentage of a donation to a hospital would be directed towards research into childhood cancer. Donations may cover operating costs, research into other diseases, and/or childhood cancer research.
    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)
    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)
    National Cancer Institute: it's your tax dollars at work. Over the past five years, it has only directed between 3.6 and 4.0% of its total budget, an average of $176 million/year, to pediatric cancer.
    Childhood cancer groups: on our list direct at least an average of $0.80 to childhood cancer for every dollar of public support. Please consider St. Baldrick's, Alex's Lemonade Stands, CureSearch, The Rally Foundation for Childhood Cancer Research, Cookies for Kids Cancer, Bear Necessities, B+ Foundation and others listed on KidsCancerFight.org (a collaborative project of many national and local childhood cancer groups). These guys direct money only to childhood cancer related causes, primarily research. Awareness --> Funding --> Research --> CURE!
    The FDA has only approved of 1 new drug in the last 20 years for children's cancer. And 36 children will be diagnosed with cancer a day and 7 children will die from cancer a day.
    3. Why do you think childhood cancer rates have been rising over the past few decades and what are the most effective ways that parents can help to ensure that their children are better protected against this disease?
    I'm not really sure why they are increasing. Even when doing some research on the matter there's not much on the why the increase? Unlike some of the Adult Cancers, doctors tend to tell you that it could have been their lifestyle, or in their genes. But a lot of these kids parents even say that cancer doesn't run in the family. So they don't understand the most common question, "why my child?"
    There is basically nothing you can do, to protect your child from this disease. The only thing you can do is to know some of the symptoms and if you feel something is not right with your child keep pushing the doctors until you get answers.
    4. The Pink Ribbon that symbolizes the fight against breast cancer has become very recognizable. Why do you think the Gold Ribbon, which symbolizes childhood cancer has not yet received the same popularity?
    I think there are many different reasons why it's not popular. One would be, because many people don't want to face the reality that children can get cancer and even die from it. So they tend to look the other way. I believe once people face the fact children get cancer and there is so little funding that Gold will be the new Pink.
    Page 3 of 3 - Another reason for the lack in popularity, is because the American Cancer Society, pushes and pushes for the Pink Ribbon. I feel it's because adults have the money to spend and the children don't. I feel the ACS is all about the money. And their misleading the public into thinking they actually care for our children. They have no problem placing sick children's faces on flyers and ads but only spends 1 penny for each dollar they make for our children. They also kept it quiet they were shutting down their Camp for Kids and are cutting back on scholarships. Claiming it's due to budget cut backs. But if you had breast cancer the ACS will pay for a gym membership so you can stay healthy and supply you with prosthesis, as one woman has stated on the internet. Our children should be our number one priority. They are to little to speak up so we have to speak for them.
    5. September is Childhood Cancer Awareness Month. What are some ways, besides monetary contributions, that people can help to fight against this childhood disease?
    If you can't donate, then "speak up" for these kids. Just passing along information to other's who are unaware is helping these children. Ignoring it doesn't get the awareness out there, and with no awareness there is no funding, and with no funding there is no cure. Don't wait until you have been effected by it directly. Just try to imagine those dreaded words every parent never wants to hear, "your kid has cancer."
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