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What has JDRF done for you?

Discussion in 'Parents of Children with Type 1' started by hawkeyegirl, Feb 3, 2011.

  1. KyleBugsMom

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    I thank everyone for their educated views. It has really opened my eyes. While I do support JDRF and will continue to do so - they have done so much for our family - I also now see the need to diversify where our donations go. I feel in my heart that SOMEONE will find a cure, so why not spread the "wealth".
     
  2. hawkeyegirl

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    Really, if you look back at the thread, basically the only person who has started any drama here is you. Pretty much everyone else shared what JDRF has done or not done for them (including what advances may have sprung from the research they fund) and/or what they would like to see JDRF do with their new stated focus. You just seem to be angry about my stupid thread and all the stupid people who don't have anything positive to say about JDRF and don't know why we don't just stop our stupid bitching and create a new organization or something. Since when is post after post in that vein your style?

    Of COURSE this sprung out of the recently closed thread. JDRF has made a pretty major announcement here that they're switching from a cure-based mission to pursue other avenues. I just don't get why you are so angry about a thread asking people how they they have benefitted from JDRF in the past and how they would like to see JDRF spend their money going forward. I realize that you think that I have nefarious motives here, but if I was trying to create a thread where people just post how much they hate JDRF, I've done a pretty poor job, since people pretty much stuck to answering the question that I posed.

    You seem unduly P.O.'d that not everyone shared "positive experiences" with JDRF (although many did), and you seem to be taking this all rather personally. That is honestly unlike you, and I'm scratching my head trying to figure out your hostility here. Sincerely.

    I do appreciate the people who have made thoughtful, reasoned posts. Very interesting.
     
    Last edited: Feb 6, 2011
  3. buggle

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    Since the other thread is closed, I wanted to correct some info that I posted. I have been confused about the role that Robert Johnson played in his family company of J&J. His father, grandfather and great-grandfather -- all with the same name -- were CEOs. Robert IV is the CEO of a company called The Johnson Company. I should've paid closer attention, because this is not J&J. This a private investment firm. Robert IV is an heir of J&J, but is not actively running the company.

    His position with JDRF is as the chair. According to their website he is currently in that position.

    Patricia was right to verify. Thanks. And I'll be more careful in my fact-checking from now on.

    I'll leave it to you all to decide what you think about conflict of interest and corporate influence. It sounds like it's unimportant to pretty much everyone anyway.
     
  4. Joretta

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    They gave me a lunchtime cookbook when I went to an advocacy meeting. Nothing else.
     
  5. selketine

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    In the Washington, DC metro area they are pretty active. When William was first dx'd we got a Bag of Hope and someone from the local group called me a time or two - I may have called her also. We have a chapter that meets at a local library once a month not super far from my house (20 mins depending on traffic) and I've been a few times. I've corresponded with people from there who have kid in my county school system. I know they do events like a gift wrap kiosk at the malls, walks, parties, etc. The local help when William was first dx'd was helpful and on the mark.

    Seems like if you have a group local to you they can sometimes be a positive experience for newly dx'd families trying to connect.

    My biggest negative was several years ago they aired JDRF commercials on Cartoon Network in the early evening or mid-day when William would be watching sometimes and the commercial literally went into the serious complications of type 1 - and he was old enough to understand. That was horribly inappropriate and I complained quite a bit about it. I realize they were public service announcements and they claimed to not have control over which one got aired but I find it hard to believe they couldn't stop kid's channels from showing ones about complications. They eventually did stop I think.

    The ADA has been most helpful for me for school issues - they have some top notch people in the national office that are very passionate about type 1 issues. The local ADA did a presentation at my son's school and they were great with him and their school program was great I thought.

    I have no idea what the debate is about - not sure I want to know.;) I think if we generally support the ones we feel support us then our opinions on that are varied enough to spread the money around - hopefully.

    I would like JDRF to make the point that our "juveniles" grow up into adults. I know the title is about the disease and not the age but it makes people think that kids grow out of it.
     
  6. Flutterby

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    Come on.. can we get the thread back on track..coming in to just add a snarky comment doesn't do anyone any good.
     
  7. frizzyrazzy

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    I'd like Jeff to delete all the superfluous posts which have added nothing to the conversation. then we can get back on track. :)

    I'd like to add - I really think the DC JDRF is doing a remarkable job. I applaud them for all they have done. Everyone seem really engaged in that chapter.
     
  8. Flutterby

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    Do you think it has anything to do with its location?
     
  9. Nancy in VA

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    What would location for the DC chapter have to do with how it does? I would expect LA to be a pretty great chapter, but to listen to folks here, its not. I would also expect the NYC chapter to be a pretty good one, due to the market

    For me personally, I'm fortunate that I am part of the Capital Chapter - because of my role as the Legislative Chair, I do a lot of Gov't Relations work. The National GR office is in the same building as the chapter - so I am able to leverage them more than any other chapter. And that is a benefit to me.

    Honestly, the geography of the DC Capitol Chapter makes it hard for some - for example, Christina posted about her experience with the DC Chapter. She lives about 60 miles from the chapter and there are no activities out her way. I only live 30 miles out and honestly, there aren't many things out my way - for the most part, I have to go into the city for activities / events. Thankfully there is a walk out near us, but the amount of land it covers does make it hard to meet the needs of folks that are further out.
     
  10. Becky Stevens mom

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    I would honestly say that this is what has made it difficult for me to get more involved in JDRF is the travel to the nearest place where the organization is very active. There is nothing within an hour for me and Im embarrased to admit that I dont do well driving in city traffic:eek: Ive never driven in our capital city before where JDRF is most active and where they have support meetings at our Children's hospital. It also seems like in many of the outlying areas and rural areas where I live that people that have CWD dont really know about one another. I wish there were a better way to be made aware of one another so that we could connect better and get meetings organized.
     
  11. Nancy in VA

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    Becky: We have a little network of folks out in my area - not through JDRF just through personal connections. I met some through JDRF but others are friends of friends. Honestly, I have a list (sadly, actually) of more than 20 people in about a 5 mile radius that are T1 - most diagnosed in the past 5 years. There are 2-3 of us that seem to always get the call when one of our acquaintances finds out someone is diagnosed. And, things like the fact there are 4 T1s in my homeschool group.
     
  12. Flutterby

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    I don't know, thats why I asked the question.. But, I did wonder if it had anything to do with being in DC and having more leverage just because its in the capital.:cwds:
     
  13. lotsoftots

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    we have a support coffee not even 3 miles from our house..it just started out with one mom's ideal..now grant it right now we dont have a lot in our group but word of mouth is starting to spread and you got to love fb for getting the word out to even more..our school nurse also had it put in all the school news letters. a lot of things starts out with an ideal and spreads :D
     
  14. Nancy in VA

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    I don't think so. Actually, I think its hard because I think we are the only chapter that covers 2 states AND the district - I have 3 congressional districts in VA, 2 in MD and the DC delegate. And the way the districts are drawn, it goes 60 miles to the west in VA and another 25 miles to the east in MD. And the mentality around here is "not wanting to cross the river". Virginians don't want to cross the river into DC or MD and the Marylanders don't want to cross into VA. We actually do a lot of analysis of fundraising compared with population, staff, etc and the chapter is actually pretty efficient with their fundraising as it compares to the relative population and the staff - maybe that's why they are able to do more. Most of it is volunteer driven though and it is really tough to get volunteers for some of the events. Lots of our board meetings have talked about ways to identify / leverage volunteers since that is typically the biggest challenge of any chapter.
     
  15. Flutterby

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    We have people here that don't want to go south of the tolls, or north of the tolls for anything.

    I wasn't wondering if it was so much as the volunteers and such that is around but maybe because its so close to congress and where the government is 'run' that maybe JDRF wants to have a bigger presents there? So when they DO go before congress they can say we do this, this and that? Those that work are more driven to make sure JDRF is a known .. so when they go to congress they don't hear 'JDRF who?'.
     
  16. Judy&Alli

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    JDRF really came through for us when Alli was first dx'd. We had trouble with her school and they sent out a volunteer to do an inservice for us. I will always be grateful for that. We also got a bag of hope.

    Last year we had a fundraiser at our home and raised a lot of money. We had a blast doing it. We had a large walk team and made sure everyone had at least 100.00 so they could get a t-shirt. We got there early, and they ran out of t-shirts. I was not happy, isn't this why they want you to pre-register? Anyhow I was able to put it all behind me, because Alli loved it!!! It made her feel like she was making a difference. So in that aspect JDRF has done a lot for my daughter!

    What I think would be neat is to have seperate t-shirts for all the T1 kids/adults. I think it would be neat for Alli to see the other T1's and for all the walkers to see who they are walking for. Something simple like thanks for walking and their dx date???
     
  17. sooz

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    I also support JDRF and one of the reasons is that they diversify our donation for us by funding promising research that I would have no way of evaluating. :)
     
  18. Melissa

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    I think the DC Chapter also has done a great job of getting "older" T1's involved too! They have an AT1 group(adults with Type 1) that meets every month - it's 20-30 year olds that go out to dinner or some other event (like ice skating, holiday party). My husband attends them... it's good for him to talk "adult" D sometimes.

    I've been VERY happy with our local JDRF!! The staff is great! The DC area has some really great support groups, so JDRF fills in with a few great programs: Research Summit, lunch at Nationals stadium and a wonderful mentoring program!!
     
  19. Nancy in VA

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    That part of the work isn't done by the DC Chapter - that is all the JDRF Gov't Relations office. They each have very different objectives and the only way that the chapter is involved with Congress is when I recruit the staff as volunteers to help out with Gov't Relations events, or when they go to a Promise meeting in their own district. Other than that, all of the activities to get visibility with Congress is done by the Gov't Relations office and its volunteers.
     
  20. Flutterby

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    I guess I'm just not saying it right, sorry.
     

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