« Guest Post: New to Diabetes. New to Motherhood. New to Cancer. | Main | From Abby: Dr. Awesome. »

From Abby: Getting in Touch with JDRF.

Abby, like me, grew up with the JDRF as her go-to organization for diabetes.  She's recently reconnected with her local chapter, and people recognized her from Twitter.  (HA! Abby! I told you you'd love Twitter. ;) ) Here's an update on how she's getting in touch with the JDRF locally.

*   *   *

How do you advocate?  And do you use an old-school radio microphone?  When I was a kid I was such a big fan of JDRF. I walked on my friend's advocacy walk team even before I was diagnosed. (I was diagnosed with diabetes two months later - that stuff is contagious apparently.  And yes, I am kidding.) I went to every dinner, kick-off event, fundraiser; You name it, I was there. I even got to the point where I was speaking at these events. Telling my diabetes story to get people to "understand," and donate money. I loved it.

The JDRF is an amazing organization, they do so much for diabetes, they make kids and families feel like they aren't alone, and that they have support whenever necessary.  They have even made huge strides in the Artificial Pancreas Project, which is quite literally the closest thing we've had to a cure in - well - ever.

In short, I love me some JDRF.

Unfortunately for the past eight years or so I hadn't been as involved as I probably should have, or have wanted to be.  Once I went away to college, it was hard to keep up with my walk team, and to raise money when people thought I had the kind of diabetes that the press likes to make out to be the patients' fault. I eventually gave up on it, and turned to camp instead.

Since moving to Boston, however, I have realized that I need to get back into helping - and it just so happens that the Bay State Branch of JDRF is starting up a Young Leadership Committee here in Boston.  I don't know much about it, but Briley invited me to go to a meeting a few weeks ago with her to check it out.  I figured at the very least it would get me out of the house and to meet new people.

After the initial "Hey, are you Abby? Do you work for Kerri? I recognize you from Twitter," silliness, the meeting got started and I was quite impressed.  I did feel a little out of the loop since it was my first visit and they were talking about all these other events that had happened that I was completely clueless about.  This YLC group is targeting the "lost generation" of people with type 1.  Those of us who are 21-35 years old who have had this disease forever and kind of get forgotten about since we're past the cute kid stage.  So far, they are planning on doing a holiday meet-and-greet type of event in Boston, so we can get to know each other better and have a more solid support system here in the Boston area.  I absolutely loved this idea.  There was also talk of a Marathon Monday fundraising event at a bar on the route. Again, such a great idea.

I guess what I took away from this meeting is that even though I was definitely an outsider in this group, there are people who acknowledge this population of PWD who have been lost in the shuffle, yet have a lot to contribute.  We have friends and contacts and interests that are much different than the child demographic, and tapping into this resource could generate a lot of support of JDRF.  I'll definitely be keeping up with this group, and hopefully getting back into JDRF as much as I can.

*   *   *

Not everyone has to support the same diabetes advocacy organizations or even the same goals.  Our strength is not what divides us; it's in what unites us.  What are your favorite ways to advocate for diabetes? 

Comments

Hi Abby (and Kerri, from afar!),

As always, thanks for posting! I live in Boston, too, and have always wanted to get involved with the JDRF. This Youth Advocacy Committee sounds pretty awesome. Abby, can you let me know when the next meeting is?

Thanks!
Kate

So if you like their page on facebook the updates are on there :)
http://www.facebook.com/baystateYLC

Ditto on Kate's comment above! Can you post info on how to find out more/get more involved in the youth advocacy committee in Boston? Thanks!

I help out at camps as a counsellor :)

I love the idea of reaching out to the "Lost Generation." I also have been learning that the more we "lost" ones speak up, the less alone we are. Way to get involved!

This is wonderful, Abby! But please open the doors for people even older than 35...there are some of us that are T1 that often get left out in the cold because we are also thought to be the "other" kind of diabetic. I have lived with T1D for 45 years and there is a lot of sharing and caring that I could give (sorry I'm not in Boston or i would definitely be there!) soplease, do think about encouraging a few of us more seasoned PWDs into the crowd!
You are an inspiration for all people with type 1! Good for you!

Thanks for posting Abby (and Kerri). I have been involved with JDRF since about a year after my son's diagnosis (10 years ago). I've dealt with folks at the local, regional and national level and have been very impressed. Abby, if you have a chance to go to a national event I would highly recommend it, you will walk away feeling really great about the progress that is being made.

Thanks for sharing this, Abby. Sounds like there's a great effort underway in your Boston chapter to focus on the "lost" adults. We've been really focusing efforts here in Indiana like that, too, but haven't yet fully gotten the YLC-style concept off the ground. But I'm looking forward to that happening soon... looks like the JDRF, through local folk, are making progress on this front. Looking forward to hearing how it goes!

After 28 years with type 1, I can say I have NOT been a resolute fan of JDRF. Only recently have I begun to appreciate the depth and importance of the organization's advocacy.

When I was diagnosed, testing urine for glucose was still the standard course of self-care. Can you imagine? Thankfully I was able to get one of those brick-sized "glucometers" with medical insurance dollars, in no small part due to JDRF stamping and wailing and otherwise making a lot of noise in Congress. Now that I understand the games and musical-chair agendas that are carried out in politics, I give JDRF a great deal of credit for shaking the tree on my behalf.

Here's my ish with JDRF. Like every organization on the planet, JDRF needs funding to effectively serve its community. I hate that JDRF is so obviously shaped by the agendas and promotional pushes of its benefactors. There is a ton of serious, promising research being done across this country and throughout the world. In my opinion, JDRF should strive to shine its spotlight on ALL of it. It should gather up as much information as possible and provide updates on progress. If you asked someone who primarily relies on JDRF for info about scientific innovation in diabetes, they'd probably mention the artificial pancreas, a development by a big pharma company. I don't think I've received a mailing from JDRF over the past year that didn't allude to the artificial pancreas. But the artificial pancreas is NOT the only show in town, and JDRF is under serving by primarily being a promotional vehicle for a big pharmaceutical company that can more than afford its own advertising.

I believe JDRF has the ability to generate revenue AND remain true to its founding principles and serve the best interests of the community it serves. JDRF's heart is in the right place. I'd like to see it distance itself more from diabetes-focused big pharma. We all need to keep in mind that even though big pharma LOVES each one of us diabetics and wants us all to live long lives so we keep buying the insulin, test strips, meters, lancets, pumps, and the other products they make, a CURE is going to kill their profits. So essentially, JDRF and its benevolent sponsors are working towards conflicting outcomes. Big pharma is NOT our friend.

Our friends are the small, under promoted, financially-strained groups of scientific researchers who lack a promotional department and thus could use the giant, trusted megaphone available through JDRF.

Just my two cents.

What an awesome group! I too am a 'lost' soul and think a support system is needed everywhere. Anyone know of a similar Arizona chapter?

@Suzanne, there IS a similar group in Arizona for adults with type 1! Generation Cure is more on the advocacy side, I believe, and the Adult Type 1 network has events for, well, adults with type 1. I'm not super-familiar with everything, because I am the mom of a non-quite-but-thinks-she-already-is-adult teenager, but I do some volunteering with our local JDRF chapter (Phoenix) and get the emails about events. Check their website - jdrfdsw.org, and look at the Outreach tab on the left side, or contact Lawren Romero at the office. ;)

This is a great idea. I'm 36 and was diagnosed when I was 3 years old. I don't know anyone else with Type 1 and would love to talk to more folks about it. I can't make the 12/14 meet up but hopefully the next one!

awesome! i'm going to my first Young Leadership Committee meeting here in the next couple weeks! so excited to be getting more involved in my local JDRF too! :)

Exciting stuff! Another group that could also be served by the YLC/young adult group are the 20/early 30 somethings newly diagnosed with Type 1. There seems to be a lot of support for kids with Type 1 and their families (particularly through JDRF) and for adults dx'ed with Type 2, but not much for us inbetweeners. :)

What a great post! Bloggers at this year's JDRF Advocacy meeting in DC also raised this point, and I think JDRF is waking up to the fact that any view of T1 needs to take in all life stages. My son's 3 (dx'ed 14 months), but I hope he'll always find himself in a supportive community (whether JDRF or other). Way to go, Abby! JDRF needs people like you. :)

Post a comment

(All comments are moderated. Thanks for your patience!)