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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. hawkeyegirl

    hawkeyegirl Approved members

    Nov 15, 2007
    Honest question. If you'd like to add what you would like to see JDRF do for you, in light of their move away from being so cure oriented, I'd like to read that too.

    We received a Bag of Hope at diagnosis. If I recall correctly, it contained an Aviva meter (Accu-Chek), a Rufus and book (JDRF/Accu-Chek), a flyer from CWD, pump information from various companies, and the Pink Panther book.

    As far as I know, that's it. In three plus years, that's it. I get the "local" newsletter and see the million dollar galas in Chicago and feel bitter that my area (which includes the second largest city in Illinois) is not wealthy enough for even a little local chapter.

    That's right. I was shocked to learn that there was no JDRF chapter in our nearest Big Town (metropolitan population around 250,000). I was told that we were too near Chicago (2+ hours from downtown), and because nearest Big Town is economically depressed, the fundraising opportunities there were not great enough for a local chapter.

    As for what I would like to see from JDRF (if they're moving away from cure, cure, cure)...I'd like to see more funding of smaller researchers and companies with truly innovative ideas that would otherwise never see the light of day. I'd like to see help for people who cannot afford supplies. I'd like to see more support for the newly diagnosed and for young adults heading out on their own for the first time. I'd like to see a nationwide blitz of education and awareness (where is our pink ribbon?). I'd like to see chapters in smaller cities and towns. Even if we can't put on a million dollar gala, I'd like to think we're still worth something. :(
  2. shekov

    shekov Approved members

    Feb 22, 2008
    I support JDRF. I know that they have moved $$ toward research into other areas but I don't see that as a bad thing. Improving the technology that improves the lives of the people we love while working on a cure seems like a logical thing IMO.

    Feel free to put your $$ where you feel it should go. I have no problem with that. the more $$, the sooner the improvements and a cure. Everybody wins.
  3. hawkeyegirl

    hawkeyegirl Approved members

    Nov 15, 2007
    That's great, but I'd like to hear what they've done for you and/or what you would LIKE them to do with their money, if you wouldn't mind sharing. This thread isn't really about whether you support them or not.
  4. frizzyrazzy

    frizzyrazzy Approved members

    Dec 23, 2006
    our JDRF chapter has held "coffee" programs where a family will host an informal evening, JDRF will provide the materials and the speaker, the host family provides the location and the munchies. We've attended a few, however, like you Karla, our JDRF chapter is based out of Boston so nothing happens in our location. These coffee are generally adult only (unless it's a specific kids function) Other than that, we've seen very little in support for our kids. And the bag of hope, which came nearly 6 months after dx only because I was getting JDRF money emails but hadn't heard from a single live person.
  5. Nancy in VA

    Nancy in VA Approved members

    Jul 16, 2007
    Our JDRF chapter has a number of activities.

    They host 2 walks - one in DC and now they have started one WAY out near where I live (30 minutes from downtown). They also hold the gala. These are the two major JDDRF fundraising events and they are targeted at raising the majority of the funds from our chapter.

    Our chapter just hosted the Research Summit that many have blogged and written about this weekend.

    They host support groups in several areas of the chapter - just not mine.

    They have a mentoring program where an experienced mentor reaches out personally to a new family to offer support

    They have a group specifically for Type 1 adults. Its a social group and this group has started to get involved with other activities, such as the Ride, etc.

    They provide support to small groups (school clubs, etc) that wish to provide support or raise money for JDRF.

    The bottom line is that JDRF is designed as a research organization. It wasn't designed or intended as a "support" organization. Being a research organization, it has two activites: raise money, fund research.

    Others have looked to it for other purposes but honestly, that's not what its mission is. It has, in many markets, filled the voids that are needed in support of the families - such as support groups, etc. In some markets, they are just about fundraising. But, that is their primary goal and I don't resent them for that.

    We're fortunate that our chapter has tried to do more for the families that support them. Their walks are big events and there are lots of people there that don't actually raise funds - they are just there to walk and play - and they are very welcoming to them. But, their operating budget for the chapter is designed to support a specific fundraising goal and if they are able to provide more services to their family within that budget, while meeting their fundraising goals, that's great - but it isn't their primary mission and I don't expect it to me.
  6. obtainedmist

    obtainedmist Approved members

    Aug 3, 2010
    The JDRF made us feel supported when Molly was diagnosed. The walk just three months later made us feel empowered. We've heard wonderful presentations on the webcasts as well as in person about the gazillion different approaches to research, both biological and technological. I'm thrilled with their lobbying activities that have helped renewed the government funding to continue research on Type 1...even though it's such a small percentage of the total Diabetes picture. Through the mentor program, our daughter was contacted within the month of dx by a delightful young woman (also t1) who took her to a baseball game and a JDRF meeting before hand. We met more young adults w/ t1 at a board meeting/planning meeting for a fundraiser in the spring and I was able to ask them some questions about college and dealing with all the D stuff.

    Most of all, it made me and my husband feel as if we were doing something positive during the dark days of the summer after the dx. I will forever be grateful for the opportunity to took beyond our own misery towards something hopeful.
  7. Beach bum

    Beach bum Approved members

    Nov 17, 2005
    Many moons ago, JDRF hooked us up with other families with D in the area, which was a big help in the beginning.

    Posters for our lemonade stand.

    Supplies to hand out to the kids at school when I do the annual d talk.

    Wow, when putting it in writing, it looks kind of sad.

    New blood has come into our local branch and I'm hoping there will be more community outreach and support.
  8. thebestnest5

    thebestnest5 Approved members

    Aug 16, 2006
    There is no JDRF chapter in the state where I reside. Last state that we lived had one chapter, 4 hours away from us. I asked about volunteering to deliver the "Bag of Hope" with DD to newly dx'd T1 families--but that went nowhere.

    I requested a Bag of Hope from JDRF for DD, and she received it a while after dx.
  9. hdm42

    hdm42 Approved members

    May 1, 2008
    Our JDRF chapter is pretty active.

    We got a bag of hope.

    We have a yearly walk.

    We have a family fun day in the early fall that is sort of a walk kick-off, but a fun day too. Last year we went to a minor league baseball game.

    There's usually a summer family picnic.

    They're also having a family outing to a hockey game this winter.

    Walk awards dinner in the spring. Nothing majorly fancy, but a dinner where they give out the awards.

    They host monthly support groups and educational gatherings around the area. Some are just moms' meetings, and some have a speaker.

    They were very helpful to me when we moved here and I was creating my first 504 for school. They also got me in touch with some other local D moms in my school district to offer specific advice.

    I'm pretty happy with our JDRF.
  10. Becky Stevens mom

    Becky Stevens mom Approved members

    Oct 14, 2008
    We did receive the bag of hope approx 6 months after dxd. I had to drive 1/2 an hour to meet up with a woman who volunteered to give them out, we met at a grocery store near her home.

    I will be very honest here, ok? Im not trying to start anything with anyone and Im certainly not trying to be sanctimonious. JDRF has given me 6 1/2 years of false hope and empty promises. Of promise balls that cost way too much for me to ever attend one. Of walks for the cure where my kid cant even get a t-shirt as they didnt have any small enough and we could only get a stinkin shirt if we had $100 to give them. Of ideas using stem cells to regenerate beta cells. Of a cure, some way to make my kids pancreas work again. Thats what Ive received over the last 6 1/2 years and Im disheartened and feel close to tears lately.
  11. Michelle (IL)

    Michelle (IL) Approved members

    Jul 22, 2008
    Totally agree! I'm not sure where in Illinois you live but I have also found that if you are in Illinois and don't live in Chicago, you're kind of on your own...(with the exception of CWD ;)). So the wish for chapters in smaller cities/towns is one I share with you. I also really like the idea of a nationwide blitz for awareness and education. However, I don't think this needs to come from JDRF exclusively.
  12. twintype1s

    twintype1s Approved members

    Jun 4, 2010
    I live in a metro area with a local chapter. They actually offer a lot of activities we have not taken advantage of. Hearing some of your experiences makes me really thankful for our local office.

    Besides the walk and gala (we do the walk, not the gala):
    ? Family Team Rally for the walk at a local entertainment center--mini golf, go karts, batting cages, etc., plus dinner--kickoff for the walk. Fun for the kids!
    ? Walk awards ceremony at College Basketball Experience, an interactive museum. Tons of fun for my basketball-playing boys.
    ? Root beer float stands at local grocery stores--we volunteered for this over the summer and all 3 kids enjoyed it.
    ? JDRF Night at the Royals--tailgating/dinner/social event before a MLB game
    ? Healthy Halloween party @ the football practice facility w/ NFL players
    ? Family Connections Retreat is this weekend--half day seminar w/ keynote speaker, breakout sessions--great for parents and teens, mostly. Includes a kid zone for younger kids.
    ? Motorcycle rally fundraiser
    ? Dodgeball and tennis tournament fundraisers
    ? Mentor program
    ? 1-2x/year outreach programs for communities that are 1-3 hr drives from here.

    Our chapter has a great relationship with a regional grocery store chain, and that partnership has provided a lot of extra benefits, I think. Hy-Vee donates food at all the events (including gluten free options).
  13. BernFarr

    BernFarr Approved members

    Jun 8, 2007
    I live north west of Boston. JDRF has held a number of information sessions that provide information about exercising with diabetes, and advances like the artificial pancreas. I've found both of these informative and useful.

    Running the risks of getting flamed, can I point out that at the time JDRF was formed type 1 diabetes was called Juvenile Diabetes. If the same organization was started today, it would probably be called T1DRF, so it would address the needs of everyone with T1, not just children.

    I completely understand the need for a cure and how many of us (myself included) want a cure. But if research turned up 'a cure' next year, in whatever form it might take, it would be at least 8 years before the FDA would allow it to be used in the US, possibly even a lot longer. So if your child is over 9, they will probably be an adult before they would see a cure. That's many years of living with diabetes, which is why any research that helps us live easier more productive lives is of benefit to them and many others.

    This won't stop me supporting work for a cure. For now, my money is on Dr. Faustman's research. I raised over $25,000 to support her work, and this year I hope to raise several thousand more dollars.
  14. chbarnes

    chbarnes Approved members

    Jul 5, 2008
    The people who lead our local chapter are wonderful. We got the bag of hope in the hospital, we joined another family for our first walk, and they sponsor informal get-togethers for families. I wouldn't mind if the local program was strengthened even more, but Chris really doesn't care for D-related activities. I don't really know if the products we use had input from the JDRF, if so, it should be printed on every box. I think the JDRF does many good and important things. However, I think the fundraising efforts, the Walk for a Cure, leaves people feeling that we are making the last hard push for something that will have immediate value for our children. This is clearly not the case and should be replaced by a more honest and nuanced message. to Walk for a Better Life may not be so catchy and may not inspire as much passion, but I see a lot of folks who feel taken advantage of when they realize that a cure is nowhere in sight.
  15. RosebudMama

    RosebudMama Approved members

    Jul 19, 2008
    JDRF has been a key component to making connections with other families locally. We look forward to the annual walk, and we enjoy attending educational events - particularly when they offer a research update.

    The only thing I'd like to see JDRF do more of is to help people in underdeveloped countries access the insulin they need to survive. I'd like to see them supporting the Life For A Child program....and, if the do, I'd like to hear more about that.

    Part of their mission is to "improve the lives of people living with Type 1 Diabetes." I'd venture to say that helping them access insulin would be an improvement over the the inevitable consequence of death.
  16. thebestnest5

    thebestnest5 Approved members

    Aug 16, 2006
    No flames.:)

    I've always read JDRF that way--it's called that because it's typically dx'd in children.;):cwds:

    FWIW, I was/am the sister of someone living with T1 first--(37 years now). And I walked in JDRF Cure Walk in 1994--when he was 32 years old and had been living with D for 23+ years. I had no children at time. I did the walk for my big bro and EVERYONE who battles T1! I used to pray at night for a cure for my big brother (I never saw him complain about D and he still doesn't). But...even when I was a six years old kid I felt that D-management was too much.
  17. Tiff's mom

    Tiff's mom Approved members

    Mar 23, 2010
    Since our diagnosis 5 years ago we went to every walk, never had a team but tried to raise as much money as possible. First 2 years we were able to attend a couple of nice events sponsored by JDRF and trully enjoyed it but that was it.

    I understand that they are geared towards research and that's what they raise the $ for, but come on, we get letters and emails from them on a regular basis asking for donations. They were giving out flyers during a recent D walk inviting kids and their families to a nice event with rides and entertainment sponsored by JDRF, when a couple of months later the actual invitation came, it had a price of $375 for a family of 4 (2 kids 2 adults).
    I can't afford that, I have a $500 bill waiting to be paid for my son's new pump, so forget the "nice event", that Ds heard about at the walk and wanted to go,
    And it's so true re. a t-shirt for a kid, unless you raised at least a $100 you won't get it.

    My MIL has multiple sclerosis, the MS society sent her a wheel chair when she desperately needed one, she gets mail from them about new treatments and drugs that are out threre now, not asking for donations.
    I mean we already have to deal with this on daily basis and expenses are huge, so instead of raising awareness, organizing FREE events for kids with D, so they can meet one another and just have a good time, we get invitations to Galas with a price of $ 100 per person and more donations expected. We can't afford that.

    And until we get a CURE who is helping us on a daily basis? No one, all I got when I needed actual help was a bunch of useless phone numbers.
  18. lotsoftots

    lotsoftots Approved members

    Sep 11, 2007
    When Samantha was first dxd not much at all..as I went to my Drs support groups I met one of the out reach managers and she sent us the bag of hope..which we still use to this day.
    The next year when school started they helped us in getting our 504 plan written out and if the school wouldn't agree to what I wanted they were ready to help me battle..glad it didnt come to that :O)

    Last year I joined their mentor program :D
    we have our monthly coffee's which is great ( our group is small yet but it also just started not to long ago. I have met some really great people and people who get it:D

    The yearly conference is great, they have a lot of great speakers a nice program for the kids so they dont get board..but they really really need to get a better choice of lunches..lol

    All and all our chapter is there for you but you also have to reach out to them for help.

    oh and our chapter sponsors kids to go to camp when other wise the parents couldn't afford to send them...my friends daughter got to go to camp because of them..maybe not a big deal but it was to her
  19. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Sep 23, 2007
    I think what I'd like to know is what role had JDRF played, either in assisting in the design and development of new technologies or what have they funded that had panned out in a concrete way that benefits people (all people) living with Type 1. I get that knowledge builds on knowledge and that it can be hard to tease out an individual organizations role. And that JDRF may have funded something back in 1988 that led in time to something that we take for granted today, but I'd love to hear some specifics.

    To me, walking for a cure is something that we do for JDRF, it really isn't something that they "do" for us. We did get the "Bag of hope" and Maddie was featured in Forecast magazine soon after her dx. But it wasn't really about her, it was an article about complications and being dxd young and they just needed a bright, pretty little face as an illustration. :rolleyes: Rather telling.
  20. Our3girls

    Our3girls Approved members

    Feb 5, 2010
    Our local JDRF branch is under the Los Angeles chapter so it is small with only one full time paid staff.

    Our one paid staff and lots of volunteers organize:
    Annual walk with a pre walk kick off at a fun place like Johns incredible Pizza
    Annual wine tasting event
    Monthly support group- totally done by a mom & supported by other parents
    We do things like mini golf halloween party, meetings to prepare for school, go to the local sheriff for a tour of their helicopters, Christmas party, float in the Christmas parade... We are hoping to add more this year.
    Hockey night at a game
    Bag of hope
    Trying to get a MOM going- Mom of the month to contact newly dx families
    They give supplies to help you at your own fundraisers like banners, keychains, tattoos, flyers, silly bands...
    We had a booth at our annual marines mud run just bringing awareness and selling bracellets.
    Booth at a local restaraunts 100th anniversary
    If a parent has an idea they will support it. Like I am coordinating an Emergency Service Day with all the service providers and they will talk about how they handle diabetic emergencies- Most services providers are eager to support this type of thing- ALL FOR FREE
    I am also currently working with them to coordinate training classes- not all families can get off work to go to training at dx and often it is out of town. They are supportive of me using JDRF to promote the classes and get different benefits from the local hospitals.
    I helped get Picture a Cure going this year- we had 16 pictures of the kids and a little bio displayed at our local Airport for them month of November, it has now became a traveling display to the hospitals and other larger business'. We had a kick off to the at the airport. I have connections that other do not because I work for the COunty and am close to many of the department directors such as the director of airports- again a connection JDRF would not have without parents help. JDRF paid for the photo shoot for the kids and having them mounted.

    Often JDRF is open to supporting parent in their ideas it is just the parents have to do the work because of time and budgets of JDRF.

    If you are far away from a large chapter, ask if you can start a small branch ran by volunteers. If it goes well they may end up allowing you a paid staff??

    I am not thrilled with our local paid staff but I have learned to make the best of it and just take the initiative to do the things I think would be benefitial.

    I live by the motto if you want something bad enough then find a way to go do it. My dd loves the events and looks forward to them and really likes it when we help plan them. Makes her feel accomplished like she is helping bring awareness to what she faces everyday.

    JDRF's success comes greatly from the connects we parents can bring to them!!
    Last edited: Feb 3, 2011

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