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Children's Congress question and...

Discussion in 'Parents of Children with Type 1' started by Mary Lou, Jan 31, 2009.

  1. Mary Lou

    Mary Lou Approved members

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    Hey all,

    It's been forever and I have missed you. I have been substitute teaching since just before Christmas and while it has been an incredible experience, I am exhausted working full-time and providing care to the boys, pets and home. I honestly don't know how you full-time working folks do it.

    I read some old threads and noticed that some of our own here are going to DC and so are my boys. Brian was selected and they invited Andrew to be a delegate, too, even though he didn't apply. We are very excited for the opportunity.

    I am looking for help with the scrapbooking portion of the delegates resposibilities. We missed the conference call outlining the goal of the scrapbook and I am not sure exactly what they are looking for. Given how quickly it is due, I am turning to the best source around for all things diabetes -- you guys.

    Anything you can tell me will be greatly appreciated!

    Thank you!!!
     
  2. Flutterby

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    Congrats brian and Andrew, how exciting for the both of them, and you!! I can't help you out with the scrapbooking stuff but wanted to say congrats!! I'm sure someone will chime in and help you:D
     
  3. Nancy in VA

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    I'm on the planning committee, but focused on volunteers. If no one here who is involved can answer, I can probably put you in touch with the person responsible for the scrapbook aspect of it.
     
  4. Mary Lou

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    Hi Nancy, that would be great! Hopefully someone who has made one before can help, but if not, I would appreciate the contact.
     
  5. MamaC

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    Mary Lou,

    Congrats to your sons. Look forward to meeting you in DC.

    They are going to be mailing the scrapbook guidelines soon and they realize that they are behind, so it's likely that the deadline will be moved back.

    Did you receive the electronic summary of the conference calls?
     
  6. Mary Lou

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    Hi Becky,

    I'm relieved to hear that the deadline may be pushed back. I did not receive an electronic list of the calls, could you send it to me? I will PM you.

    Thanks!
     
  7. KitKat

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    When Hunter did his CC scrapbook we made two. One to send and one to keep. (You won't get yours back) It was very emotional making the scrapbook and when it is completed it pained many of us to send it. My advice would be, make a duplicate so you can have it at home too. You are going to have a great time!

    Just my opinion.:cwds:

    Kathy
     
  8. Mary Lou

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    I was hoping you'd see my post and have some advice. Do they send you the scapbook pages to complete or did you make yours all on your own? Was it just about life with diabetes from Hunter's point of view?

    I will definitely make a copy and/or make two. I am sure it will be a difficult but rewarding experience, much like making our video.

    Thank you!
     
  9. TripleThreat

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    If you need any help Mary Lou let me know i have a room dedicated just to Scrapbooking and crafts.
     
  10. KitKat

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    We showed Hunter's life prior to diabetes 1 page, I think. Baby picture, family etc and then him with diabetes. We showed pictures at the hospital...the needles, pump, everyday stuff to us. We showed him doing his sports and testing his sugar. His story about legislating a law. Just show a pictorial of their life. BUT HERE IS THE KICKER!!!.......YOU ONLY HAVE SO MANY PAGES TO DO IT!!! So, I would lay everything out. It took me 2 weeks to do it. I had to reduce...evaluate what was important and remember who your audience is....LEGISLATORS. You want to tug and pull at their heartstrings...you want them to "get it". We had pictures with his friends and telling them bye because his sugar wasn't stable enough to stay.

    I cried the entire time I did it. Cried when I looked at other delegates books but I cherished that there were 150 Moms and Dads there with the same hopes and dreams I had..........a CURE!!! A day when Hunter and we all could say, "I use to have diabetes!!"

    Good luck and PM me with any questions.
    Kathy
     
  11. Nancy in VA

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    Please make sure you follow the directions you are given THIS YEAR for the yearbook. JDRF is strugging with new, lower limits, for the cost of gifts to legislators. The limits used to be higher and there was more flexibility as to how they were done. Just a caution because you don't want your scrapbook put aside and not given because it exceeds the gift cost limit
     
  12. KitKat

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    So they aren't given all the materials to each delegate to complete the scrapbook? We were given very clear instructions, all materials but pictures to make the scrapbook.

    Mary Lou, it sounds like you best listen to Nancy. I assumed it would be like it had been in 2005 and 2007 where they give you all materials but it sounds like you are on your own.

    Have a great experience. :)
     
  13. Nancy in VA

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    I'm not sure 100% what they are doing - I think that's part of the reason for the delay. Evidently someone has found something that they can do to keep it under $10 per person but I'm not sure what the specifics are. I just don't want someone to put a lot of time and heart into something and then have an issue with it being given to the legislator.

    I'm looking forward to CC. After I see the schedule of events and when I'm down for my own volunteering, I'll help organize a time for us from CWD to meet up
     
  14. MamaC

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    The issue as I understood it from the conference call was 1) cost and 2) keeping this in the realm of educational material, which can be accepted, and not a "gift," which cannot.

    Keeping costs down and the distinction between educational material and gifts may be part of the delay in getting the info and materials out.
     
  15. Jensmami

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    Congratulations, Mary Lou, Brian and Andrew!

    Becky and Mary Lou, are you going to Washington earlier? We are thinking on spending the weekend prior to CC in Washington. Can't wait to meet you all!:cwds:
     
  16. Mary Lou

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    You guys are all great. I appreciate the information and feel a lot better about not having started.

    I was worried because I missed the phone call and the due date is coming up. I haven't received any emails or communication beyond the ones that said Brian was selected. I want to do a good job with every aspect of this, and would like to get started as soon as possible.

    At the very least, I will begin to gather photos and make copies and think about how we will present the boys' stories!!

    Caro -- congrats to you, too!! We are planning on staying extra at the end of the conference to visit friends and do some sighseeing, but I am also hoping to come for the weekend before :) It would be amazing to meet you and the other CWD families!! We should definitely try to organize something (or just do whatever Nancy figures out :D)
     
  17. MamaC

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    I'm 12 miles outside of DC so I can come early, stay late, whatever! And if you have any questions about DC in June - feel free.

    I know that Tom has a skateboard competition the weekend before but we don't have those details yet.
     
  18. Dx011106

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    Hello everyone... Have the lingering questions been resolved? I know exactly who to contact if there is still a need for answers!
     

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