Comment

Comment by A. Kelsey Metcalf on January 31, 2013 at 6:33pm

I'm on it! :) I'll keep you posted.

Comment by Natalie ._c- on January 31, 2013 at 6:29pm

Reno, Nevada. And the call was about a year or so ago. I don't remember who I talked to -- she wasn't really impolite, but just very firm about being uninterested in even trying. Their big focus is fundraising, and they sponsor galas, and the JDRF walk, and other expensive events, which I don't go to for financial reasons. I would personally be willing to lead such a group, but don't have the space for it. I'm pretty sure they have parents' groups, and teen groups, but not an adult group.

Comment by A. Kelsey Metcalf on January 31, 2013 at 6:06pm

Where are you? City/State please. I'm fired up now and I like a challenge. Also, how long ago did you contact them? And lastly, do you remember who you spoke to?

Comment by Natalie ._c- on January 31, 2013 at 5:56pm

I contacted the local JDRF about starting a T1 adult group, and they were emphatically NOT interested. They said there was no interest in the community, and I wonder how they would know, since they don't advertise or do anything else for adults. It's ONLY children, children, children (oh yeah, and fundraising drives with ads including pictures of cute children), and while I believe that yes, support for children and their parents is important, it just so happens that children with T1 DO grow up, and some of us are diagnosed in adulthood. So, A. Kelsey, you're lucky to live in a place where JDRF is cooperative, but it ain't here!

Comment by Natasha Bowlds on January 31, 2013 at 5:04pm

30% of donations to the JDRF go to type 1 research grants, even though they primarily appeal to our desire for a cure when asking for donations.

Comment by Natasha Bowlds on January 31, 2013 at 5:02pm

JDRF is actually not supporting nearly as much cure research as they used to - from the "State of the Cure" report published by the Juvenile Diabetes Cure Alliance: "JDRF, the largest type 1 non-profit, is the primary driver of the downtrend trend due to its strategic deprioritization of cure research in favor of treatment and complications research.7"

Comment by barbraann on January 31, 2013 at 4:13pm

I'm sure the Dexcom and Omnipod people are constantly working to get Medicare coverage, It would be a tremendous step for them and a huge increase in revenue. I just don't like sitting around with my fingers crossed and waiting. Wish there was something I can do.

Comment by lisa c on January 31, 2013 at 3:41pm

great info...thanks

Comment by A. Kelsey Metcalf on January 31, 2013 at 3:38pm

FALSE. I don't know how long it's been since you were at all involved with your local chapter, but JDRF provides so much support to those living with this disease. Next weekend I'm attending a conference, hosted by JDRF, with incredible learning topics. You can see a list here: http://www.sctx-jdrf.org/T1todaytime.html. Also, I'm involved in a support group for adults with type 1 through my local chapter. If you haven't worked with your local chapter in a while, it might be time to give them a chance. If they don't yet have a support group for your needs, they'll help you start one.

Comment by lisa c on January 31, 2013 at 3:31pm

JDRF is wonderful, but they only raise money toward a cure. they do not advocate for the day to t day type 1 issues and needs.

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