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Article frustration...

Discussion in 'Parents of Children with Type 1' started by 4kids4me, Aug 7, 2010.

  1. 4kids4me

    4kids4me Member

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    Have you ever (and I'm actually sure you have) gotten the impression that everybody (the powers that be) would really just like for you to just "sit down and shut the F up" about your D concerns? You'll recall from about a week or so ago, the response that I received from JDRF about some statistical info that I needed for my article and the lady I was corresponding with, seemed genuinely interested in "talking" with me. I sent a well written letter back to her along with a copy of my article...I don't know, maybe thinking she/they might really be interested in what I had to say...maybe even want to use some aspect of our personal story to help further the cause. Well, I guess...not so much! This is the reply that I received today:

    "I?m hear anytime! Stay tuned for out T1D Aware initiative ? we will teach the US the difference between type 1 and type 2 and eliminate deaths that result from unawareness."



    Andrea Hulke, MSW

    Director, National Outreach

    Juvenile Diabetes Research Foundation

    336-992-5373 (office) 336-413-7832 (cell)


    "Leave your footprints on history; be known as someone who helped cure type 1 diabetes"



    So VERY disheartening! *sigh* :(
     
  2. StillMamamia

    StillMamamia Approved members

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    I'm sorry the reply didn't live up to your expectations.

    Don't be disheartened.

    As the the very wise son of someone on this board said (no, not mine:p) - "Failure leads to success.".

    Keep up the fight, and hopefully one day your intent will be understood and come to fruition.
     
  3. 4kids4me

    4kids4me Member

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    Thanks for your encouragement. Ever wonder what it takes to get someones/institutional/agency/etc attention? Wouldn't it be nice if something would be easy for just once? That all the moons and stars would align and voila', a "light bulb" moment is born and that "someone" says, "hey, you know...I think you've got something that other folks might like to hear about". How tragic AND preventable does a story have to be to warrant attention? I guess I obviously don't have the answer to that question.
    Thanks again...I'm not going to quit, but I was just stupidly hopeful.
     
  4. Becky Stevens mom

    Becky Stevens mom Approved members

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    Deb you know you have our attention:cwds: Ive always thought that you should be appearing on TV, shows like Good morning America and of course Oprah. The fact that you are not only willing but desperately wanting to tell your story and honor Mary Kathryn is something that organizations like JDRF should pay careful attention to. Ive often thought that they are more interested in research, and thats fine, but I would like to see an organization for children with type 1 diabetes that is just about awareness, advocacy, helping people get the supplies that they need to care for their CWD.
     
  5. 4kids4me

    4kids4me Member

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    Becky, you are so sweet and of course, I know you guys all have my back. You've all always been so supportive and I hope you know how much I appreciate your acceptance. :^)
     
  6. mmc51264

    mmc51264 Approved members

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    Our local JDRF seems to have dumped me after I had issues with my child's school. Was told what a wonderful person the 504 coordinator was and how supportive he was of them. Well he wasn't very interested in MY child's care and we ended up having to hire a lawyer. I no longer get calls to volunteer and be on committees I had been on. Oh well.
     
  7. ShanaB

    ShanaB Approved members

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    Have you tried working with the ADA? I'm not knocking JDRF but I find the CDA much easier to work with. JDRF really is focused on research whereas I think the ADA/CDA would be more open to working on an awareness campaign.

    You are my hero for continuing to create awareness in Mary Kathryn's memory.
     
  8. Christopher

    Christopher Approved members

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    If that is from someone at the JDRF, that is kind of scary. I mean "I'm hear anytime"? Should be "here". And that is from a JDRF Director?

    Also, I understand your frustration, but if you did not specifically ask her to use your story, then it may not be realistic to assume she will know what you want.
     
    Last edited: Aug 9, 2010
  9. jjules

    jjules Approved members

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    Hi Deb, Ive just found and read Mary-Kathryn's and your story. I have cried and smiled and been angry. At times as I read I could barely regulate my breathing. I just wished I could hug you so instead I signed your petition and posted on facebook. I spent the last few months since diagnosis of my son wondering why the FRICK the GP didnt after 13 visitis in 8 months for a 'mystery illness' just do the simple finger prick routinely.
    I agree with the previous poster that you should definately contact TV shows. Your message is vital and needs to be heard.
    Jules xx.
     
  10. Jeff

    Jeff Founder, CWD

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    I'm going to reach out to Andrea. She is a good friend, has type 1 in her immediate family, and is working very, very hard to do the right thing and make a difference. Let's give her more than the benefit of the doubt here.
     

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