The local JDRF is hosting a type 1 day, November 14, 2015. For info go to the JDRF Portland facebook page and click as directed. You need to register and you can do that there. I’ve been talking with them, and it looks like it will be thorough and focused (not like the ADA expo which only had things for newly Dx’d TwD2’s who needed to lose weight).
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Thanks for letting us non-FaceBook folks know about this!
I googled it and got this
November 14 is World Diabetes Day! if you go to this, wear blue and take pictures!
And all of you who do attend, introduce yourself to me. I’ll try to wear a nametag that says “artwoman”. It will be 4 years 10/23 that we’ve lived in Portland and I would love to meet others like me!
Is there any published program or will that come later? Or is it just informal. If I don’t get there until 10 or 11 what will I miss?
From what I’ve learned there will be a program, it is a work in progress. I guess they were busy with the Walk - there are only 3 staffpersons. I had contacted them to see if they would support me (not with $) in my efforts to bring TCPYD to the PDX area, I called the local JDRF to see if they would back my idea. That’s when I learned about their plans for a type 1 event. So, I am eagerly awaiting the agenda etc. I will be bringing materials for people to take with them about the various DOC resources (calling in lots of favors so people had better take them!)
Another post from me, I am looking forward to finding which health plans are working for people up here. I had a great HMO in San Diego and have sticker shock with PPO plans with high deductibles and learning what is covered (and what is not) after I sign up. Be prepared to be “interviewed” during my search for coverage. Thanks.
Hey, @artwoman, did you attend the conference? Any highlights you’d like to tell us about? Thanks!
I was kinda disappointed - but I am telling myself it was their first T1 conference, and I am hoping to be involved innext year’s (they said they were planning one for 2016). The break out sessions were mostly directed at kids and parents of kids with D. I admit, I didn’t stay for the last session where OHSU Endo was going to speak about what’s coming down the pike in terms of D treatment etc,
I admit, I got spoiled by attending the TCOYD conferences for 10 years (check out TCOYD.org and read the agendas rom the various conferences). Since the majority (I think I’ right on this) of T1’s are adults (or will be) more info for us would have been great -e specially since a lot of health plans and med centers kinda leave it up to us to find the info and support we need. I would love a break out session on how to learn what a health plan DOES cover (instead of waiting to be denied a claim after you’ve joined and started paying pemiums), things for men and a session for women - we do have separate issues at times. One of my favorite TCOYD sessions was providers and patients sharing what they’d like to see from one another. (For me it’s respect, I still have problems being believed that my great A1C is do to my staying the range I set rather than a average of extreme - I’m tired of dragging out the CGM data and having to prove my point again and again. In fact at my last apt they hand me a document telling what it takes to qualify for a pump - number 1 is uncontrolled D - are they saying I can’t keep my pump?) Anyway, I digress into a tirade
The turnout was fairly small. Didn’t get a chance to mix and mingle (I wanted to get names of good Endos and health plans with which peple were happy - and unhappy so I know what to avoid). If I do decide to continue to look into bringing TCOYD to our area, there is gonna have to be more people attending. There are so many greata guest speakers to invite - or to have as Skype presenters, it would be awesome. I know the TCPYD’s have it for all types of D as well as parents, etc. Oh! thinking of kids, there is a TCPYD breakout session for teens and young adults - no [parents allowed. I think that is excellent.
If I cold get some people here in PDX area who would be willing to work on the next year’s Summit - that would be terrific. I know the JDRF has only a staff of 3.
The opening remarks were interesting, but it was kinda preaching to the choir - saying all the work that the JDRF has done in terms of treatment and cure research. I liked the idea that they focus on promising small research to get them ready for the big game and big $ supporters.
Well, that’s my take on the event. I am going to contact the local JDRF to see if I can help with next year’s. I don’t know to what effort was made in terms of getting the news out about the event - you know, contacting Endo practices etc. I didn’t see any brochures at my Endo office. I know that they had a goal of 200 (or a limit of 200) but I don’t think there were 100 people there.
Thanks for filling us in. As you say, it’s the first time for the event and hopefully they’re learned that a separate track for adult T1s is also much needed. I think it’s great that you’ve offered to help them and sure hope they get you (and other volunteers) involved. 
When I contact them and offer to get involved in planning next year’s event (I’ll call in Jan or Feb) I’ll mention that there are people here who are interested in a bigger event. Hopefully, when I post after that call, you guys will join me. They do have only 3 staffmembers, and I know that the JDRF Walk was just a few weeks before the Summit.
Maybe they really need help with identifying and booking local (or national) experts on topics of concern to T1 adults??? And maybe even a list of topics?
I sent them copies of the TCOYD agendas - since they cover so many things (for all types of D - including type 3’s - family of PWD’s) to give them some ideas. I also suggeseted having some insurance brokers to discuss how to shop for coverage, get behind the curtain as it were to learn what is covered etc. If I were more knowledgeable about the PDX area, I could help with guest presenters - but I’m not. I could “import” John Walsh, Stevfe Edelman and Bill Polonsky, but local folks I don’t know who is who (and more importantly in my mind - who isn’t!)
I do know that we’d have to get started soon, as people that would have great things to share get booked. I think the ADA should participate since they focus on PWD2’s - and they need support as well - just a different kind of support. To be brutally honest, when I first moved to PDX I went to my first ADA Expo. There wasn’t anything for me. I am not a newbie T2 who needs help to lose weight and relearn eating and exercise. There weren’t any vendors form the pump companies - I was hoping at least to meet my reps
So instead of just complaining, I decided to sdo something. I am really hoping the PDX foolks here will join me.
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