Adult Type 1 Conference

Imagine that you have an opportunity to help shape a huge conference designed for people with type 1 diabetes.  What would you do?  What would you want to see?  What would you want to hear?

I attended my very first Children With Diabetes, Friends For Life conference last week.  It was incredible, and has changed my life in many ways.  Over the next few months I hope to explore a bunch of the experiences I had and things I learned.

The Friends For Life conference is really unique because it focuses strictly on type 1 diabetes.  Every other conference I know about has to balance needs of people with both type 1 and type 2.  That is fine and good, there’s plenty of need for them, and I’ve always been able to hone in on stuff that makes those conferences worth my time.  I get a lot out of them.  But there’s something really incredible about such a large conference designed just for type 1 diabetes.

I had a chance to thank Jeff & Laura for all of the work and dedication, and they asked for our help.  They asked for the help of adults with type 1 diabetes.  They’ve been doing these conferences for about 15 years, and the kids are all growing up.  They will always need to keep focus on children with diabetes (that is who they are) but they want to find ways to make adults with type 1 part of the experience too.  They need some feedback from us in order to design a track with sessions we’d be interested in.

We’ve just been handed our chance to help shape a huge conference designed for people with type 1 diabetes.

Our part of this is easy.  We just need to answer a couple questions and share our thoughts.

  1. What are the challenges that life tosses at you most often?  Do you have the resources to deal with those challenges?  Do you need more?  What would they be?
  2. In talking about these things, what is the best format?  Someone leading a session?  A panel of experts?  A facilitated discussion?
  3. What topics would be important and interesting enough to draw sufficient people to be worth offering?

Jeff & Laura will be working hard on this for the 2011 Friends For Life conference, but they don’t have much time.  Our deadline?  Now.  Comment now. Please.

I can’t imagine organizing a conference with 3500+ people, but thinking about it from that perspective I’m not surprised that they need to wrap things up real soon.

We also need to recognize that energizing an adults with type 1 track may take a few years to really build up steam.  It is our responsibility to help them do that.  We’ve always wanted something like this.  Here’s our chance.


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139 thoughts on “Adult Type 1 Conference

  1. I am the outreach manager for jdrf in houston and I can’t stop reading all these posts! I have been wanting to offer an adult type 1 conference or one-day event for all the adults living here in Houston and surrounding areas. As I can see from the amount of responses, this is so needed and would be well-received! Thank you for all the ideas on topics and issues to discuss. We hope to have an adult event here in Houston this spring!

  2. Hi Scott,
    I am excited to hear that FFL is going to incorporate an adult track this year. I am hoping to attend! For me, some biggies are:
    Pregnancy (and pregnancy with Gastroparesis)
    Getting over the fear of having an insulin reaction as a new mother – i.e. “How will I take care of my child if I can’t even take care of myself?!?!”
    Technology Updates
    Dealing with the emotional side of Diabetes
    Burnout – not just for those of us with Diabetes, but also our caretakers, or “Diabetics by Default”, as I call my husband!
    There are so may more than what I have listed here, so feel free to get in touch if you would like to talk some more!

  3. How about a conference on the upper east coast. I am from PA and would travel to up to 3 hours but there is nothing near me. Disney is great but a family of 4 is expensive.

  4. I am 36 and was diagnosed at 18 months, I also have a T1 sister who is 34 and was diagnosed at 8. I would like to hear more about how to handle insurance, how menopause will affect us (it will be here before we know it), and how to keep up care.

  5. I think a facilitated discussion or even maybe a round table social on transitions for Type 1 Diabetics would be fantastic. Something covering how to make life decisions without letting diabetes take over or hold you back. Some sort of best practices discussion on dealing with stress and diabetes would be fantastic as well since our fast paced world isn’t slowing down anytime soon. I’d also love a perspective on the professional world with diabetes (lows and highs in meetings, last minute travel tips, variable schedules, dealing with deadlines, etc) as a panel presentation or discussion.

  6. My daughter (now 20) was diagnosed at 8. Her diabetes was easy to control until the last 2 years. My sister died a “brittle” T1 at 41 and see my daughter going down the same path. I would like to see sessions on either T1’s who were out of control and brought back in, the troubleshooting, tips, tricks, and the support. Also the T1’s who are in control how they never lost it, their tips, tricks and support.
    Mental Health support 24/7. Mentors, not for just newly diagnosed, but for T1’s that hit a bump in the road.

  7. I would also like to see a session about advocacy. There are a few things that drug or DME companies could do to improve the quality of our lives….how can we join together to push them for improved glucometer accuracy, to make different concentrations of fast acting insulin, etc? I think it would also be great to get T1 classified as an orphan disease as someone mentioned above. I would also be interested in seeing something about the health care reform and what it would mean for our insurance and treatment options.

  8. I just attended the first Friends for Life Canada conference in Vancouver as an adult with Type 1. It was truly an amazing experience just with 500 or so people–I can’t imagine what the big ones down in the U.S. are like! It was an incredibly empowering experience for parents, kids and families. At first I felt a bit out of place as an individual adult attending alone, but I soon connected with a few other Type 1 adults as well as several parents. The sessions I attended were all very informative–on the effects of high blood sugar on the body, how to bolus for foods to avoid spikes, pumping techniques, CGMS, and counting carbs. All very useful and very applicable to both kids and adults with Type 1. For an adult stream it would be great to have a combination of discussion groups, breakout sessions, and sessions with a speaker or panel discussion. As an adult with Type 1 my biggest challenge is just the fact that this disease is 24/7 and has no breaks–ever–and as far as I know will continue for the rest of my life with no breaks. It gets tiring just thinking about it sometimes! It would also be great to have sessions on things like employment and managing blood sugars on the job, at social events and parties, the effects of hormonal changes for adults, dealing with complications, how to cope with managing this disease 24/7, resources for finding and connecting with other adults with Type 1, and for spouses, close friends, and even children of parents with Type 1.. There is so much potential here.

  9. Being a diabetic myself…it has always bothered me that different types of diabetes type 1 and type 2 seem to be viewed differently…genes are genes and what is passed on from our family gene pool we can not control….including type 2.
    One day I hope they find the cure, as I am sure there will be common factors as to why anyone gets diabetes type 1 or 2.
    The disease is the disease and all types suffer similar emotional effects in some areas.
    I know for me I hate the days where I feel so tired, and can not live my life to the fullest.
    The one thing that has always gotten to me about this disease is the poor Children who can never have candy and goodies that comes naturally with childhood.
    Everyone suffers who has diabetes as well as their families that love them!

  10. I would also like to add that it would be great to see a session for those long time T1s without complications. Most of these people had poor control for many years, so BG control is not necessarily the answer in these cases. In addition to genetics, perhaps some of these people have “secrets“ they can share. Supplements they take, foods they eat (or do not eat-such as certain milk protein strains, which have been linked to T1 antibodies), routines, etc.
    It would also be nice to see a session in which people who have been involved in the different research trials (Faustman, LCT, islet transplant, etc.) can share their experience and insight.
    It would also be nice to have a mental health session that explains how young adults with brittle hard to control T1 can explain to friends and family that they are sick, even if they don`t look ill. It can be hard for a young adult to miss out on life without feeling guilty when `diabetes`(primarily Type 2) is considered a `controllable` disease with a little effort. Also, a session that discusses living wills (as mentioned above by someone else), preparing for early death, starting a family through surragacy, etc. and other issues affecting those with long term brittle T1 would be great.

  11. First, I’d like to fully agree with the dead on comments left by the T1 PhD. Thank you for articulating what many of us long term insightful and alert T1s feel. Many T1s become misled, lost, complacent, or even bamboozled by the false “cure in 5 years” promises and related propaganda by Big Pharma and related industry (including NGO charity organizations). If we sit back awaiting an “artificial pancreas” as the holy grail of diabetes, it is our own fault that we will never have a cure. We must convince companies that the real money to be made is treating the millions with T2 diabetes and obesity, the real cash cow. T1 is small potatoes, and with the advancements in treating autoimmune disease,porcine islet encapsulation, etc. finding a cure definitely should be “easier” than they would have you believe. Curing T1 will not cut into T2 profits. Even with a transplant, T2s would still need meds for insulin resistance, the cause of their disease, as well as related drugs for heart disease, high cholesterol, etc. and other insulin resistance and obesity related diseases.
    I would like to add what I personally would want to see:
    1.) A session for those who truly have `brittle` Type 1 despite their best efforts and latest greatest (inadequate) technology. I am sick of diabetes educators having sessions for those with diabetes who have “fallen off the bandwagon“ and need a kick to the behind. That describes most T2s, and only a handful of adult T1s. If we didn`t test and take our insulin regularily, we would be dead in days. Instead we limp along towards the end, alone. I test all day long, adjust my pump all day long, measure all day long, poke all day long, and still am constantly on the brink of coma or seizure. I do everything that I can to battle this disease….and it doesn`t work. Don`t you dare lump me in with noncompliant T2s. Let`s stop blaming the diabetic for failure to be a perfect pancreas 100% of the time and address the real issue…the failure of the medical community to cure the disease. 99.9% of people do not have the ability to replace a pancreas. A $10,000 pump that must be relplaced every 4 years, with consumable devices ($$$ monthly), inaccurate and potentially dangerous sensors, infusion sites and related issues (painful, infection, absorption unpredictablity, delayed absorption, antibodies), malfunctions, scar tissue, and normal BGs only part of the time is not a cure. Sorry. It is a waste of resources.
    2.) Sessions for those with other related conditions such as Addisons, Celiac, Thyroiditis, and other rarer related autoimmune diseases like MS, RA, etc. These can make control very difficult if not next to impossible.
    3.) Advocacy. How can we as patients demand what WE want. Do we want to disband JDRF and invest the money into cures we as patients deem valuable (we know their track record for diabetes cures and treatments is already nominal at best)….Do we want to make T1 an orphan disease (since most of diabetes research for T2s has little bearing on a cure for T1)…do we want a name change for our condition…how do we work together to get what we want…
    4.) Limit the amount of influnce Big Pharma has on the conference. Yes, they pay the bills, but as long as we pay them for poor tools that aren`t a cure like suckers, we will not have a cure. Their products should be a part, but not focus on the conference. I have a pump, and while it has helped, it has been more of disappointment than anything else. The CGMS is so inaccurate that I no longer use it. The money I spent on CGMS could have gone into cure research in the form of a donation.
    All of that said, I think the work of CWD is wonderful and I hope to attend a conference soon. As I personally have no interest in a conference that includes T2s and their completely different issues, CWD is a godsend in a world where everything diabetes is geared towards T2.

  12. Just some random thoughts. Scott:
    I’d like to see a session on T1 complications especially those rare ones such as cognitive impairment due to years of severe, recurrent hypoglycemia prior to the advent of home glucose monitors in the early 80’s. Gastropareris would be another interesting topic.
    A session for spouses of T1’s might be beneficial for both the spouse and the person w/T1.
    Have a session designed for those having T1 diabetes for 40 years or more and whose diabetes may rather brittle due to years of uncontrolled diabetes before pumps, faster insulins, and glucose meters became available. I’m 56 and have been a T1 for 46 years now; currently my A1C’s are below 6 due to very tight control, but that wasn’t the case from 1965 to the mid 80’s when many of the technological advances became available.
    I’d like to have some well-known endocrinologists present some of the latest medical research re T1 diabetes, and information on the latest in insulin pump/CGMS technology.
    Have someone from JDRF (Aaron Kowalski) give an update on the artificial pancreas project.
    Also, have some of the insulin pump, meter companies, CGMS companies, etc. be there for a trade show of some sort. It’d be nice to have the opportunity to meet the reps of all these companies in one, convenient place.
    A session on how to obtain affordable health & life insurance would be beneficial.
    Finally, it’d be nice to have the conference in a centrally-located city. The cost of travel to attend a conference in say Orlando for example would be cost-prohibitive for me. If the conference couldn’t be in a central location, I’d love to see the sessions be available on a website for downloading. OR, maybe have all the sessions recorded on a CD/DVD for all those in attendance or for those who cannot attend.
    I’m certain after I send this I’ll think of something else!

  13. Can’t think of a whole lot that hasn’t already been expressed on here. I am very excited about this and would make it a priority to attend.
    Like many here, I was diagnosed very young and would LOVE to hear motivational speakers who have had Type 1 for a very long time and maintained good health in old(er) age! That gives me so much hope!
    It would also be helpful to have childcare options for my 3 and 6 year old children who are non-diabetics.

  14. I became a T1 at the age of 17 in 1964. From glass syringes to insulin pumps – it has been amazing.
    Most of my issues have been covered. However, a possible topic is parallel treatments in the event of for example a cardiac prevention program or cancer treatment on top of the daily diabetic management required.
    Is there a Canadian conference for FFL?
    I would be very interested in attending a conference that addressed some of the issues proposed. I do agree that indeed you hav found a niche market.
    Good luck.

  15. I am curious as to what other options lay with those that have the privilege of being a TYPE 1 diabetic when insurance does not cover anything other than acute care. I am self-employed as others most likely are. I pay out of pocket for everything I need with no compensation other than my personal health.
    Most people I come in contact with are persons diagnosed as a child or late teen. I was diagnosed before turning 28 and I am now 32. There were many hard lessons and hoops to jump through once you no longer possess insurance. I am also interested in the mental issues that one has to manage because of the drastic high and low blood sugars during the early stages of the diagnosis as it is hard to grasp the idea of “proper” care to oneself. These drastic swings also compromised my mental health as well as physical health because it was very difficult to live an active life and full life as I had for 27 and a half years with hardly a hiccup. I am for a conference focusing on the adult, but what about the actual adult diagnosed as an adult that had to learn the struggles; and deal with the ebb and flow of life when there is no one there but yourself to try and push through adversity and hold on to sanity while continuing to hold down the other constants like established relationships, children and careers.

  16. I have to admit – as a Type 1 since age of 7 (1968) – I’m pretty well a carbon copy of DickBarton above with the comments he has made (YES – would love for it to be held outside of the United States – but let’s face it – that’s where the money is for research, etc. – so they pretty well rule the world – or am I being wrong in saying this?).
    I know that I went to my first diabetic conference in my life last October – the IDF (International Diabetes Federation) – it was a 5 days ‘schmorgasborg’ of all things bright and beautiful in the area of diabetes. Yes, many firms there promoting there stuff that’s the only way to pay for something this large (I lucked in with doing volunteer work). There were many topics that ranged from the very indepth medical jargon to those that were more light hearted.
    I think though the most important thing for me is meeting other diabetics from ALL over the world – not just North America. To learn how they cope with the diabetes in their country (many not as affluent as we are fortunate enough to be here in North America). There was no language barrier at all at IDF – and we all left with the message to educate the world about diabetes!

  17. I was diagnosed with Type 1 when I was 17 months old so this is really all I’ve known – I’m almost 35 now and I suspect my outlook is very different to many ‘younger’ type 1 diabetics.

    • Motivational speakers – those who also have Type 1 but don’t let it stop them achieve impressive things – I don’t just mean olympic rowers, but those who hold down a normal day job; have a family but still manage great things like endurance racing of some sort; those people who consider themselves normal and don’t let diabetes stop them trying stuff. People that you would listen to and afterwards thinkl ‘Well if they can do it, so can I and I’m going to do it!’
    • Group discussions on various topics – I’m not overly interested in finding out about how others deal with their diabetes but I am interested in finding out what they do whilst doing activities – what do they change/do differently to allow them to do the activities they want – this is probably a selfish thing as I’m sure there are other who also just want to talk to others with Type 1 and be reassured that they aren’t alone and there is support and help out there; that it isn’t the end of all life and you can pretty much continue with what you were doing beforehand.
    • Alternative ‘workshops’ – not just sitting in a room listening or talking to people but actually doing something – perhaps outdoor activities i.e. walking/biking/etc. Basically groups of likeminded people doing what they like doing with other Type 1 Diabetics.
    • Hearing about new research and developments – it’s good to know what is happening and what is in the pipeline; perhaps a chance to put my name forward for some new program or testing…
    • NO PREACHERS – I don’t want to be told what I should be doing, but I do want to hear from people about good practice.
    • A good social atmosphere.
    • Plenty of food (and a wide variety of drinks – plenty non-alcoholic stuff as well as alcoholic stuff)
    • Decent place to sleep but not pricey – most folk are likely to spend only a few hours in the bed so the price should be cheap enough to make people want to stay over but not cheap enough to make them think they are paying by the hour!
    • Not held in the US – I’m refusing to pay the stupid fees for administration to have a rubber stamp say I’m not a threat so I’m very unlikely to ever go to the US so I wouldn’t be attending – but that’s a rather selfish request!

    Good luck with it, hope it goes well.

  18. Apologies that I haven’t read all the other posts yet – 119 of them so far! – but I’ll add my two cents: As type 1 for 25 years, and now a mom myself, I’d love the chance to talk with parents of kids with type 1. It’d be interesting to hear their perspective and to give them mine.
    To answer your questions specifically:
    1. I still struggle with how to explain my disease to others and how to get what I need when I need it, when I’m in public. I’d love a discussion (or several) on how to deal with, say, restaurant staff, airport/airline staff, people at work, people we encounter at sports activities, etc. Family, too!
    2. Probably all of these formats, though I’d be perhaps more drawn to facilitated discussions.
    3. The parenthood topic is obviously big for me right now. I’d love to meet others who’ve faced that challenge – having diabetes and being a parent – and I’d be happy to share my own experiences. Also the mental aspects of coping with “juvenile” D as we get older. And yes, I’m interested in the “normoglycemia” idea!
    I have been relatively isolated from the D community – having been taught to try to “fit in” with the rest of the world (maybe that’s a topic unto itself). I am going to have fun reading the other suggestions, and I hope to get to know such excellent, motivated, creative people! Thank you, Scott, for kicking this off (and for whatever else you’ve done for this community; I have no idea yet.)

  19. I love the fact that Adults with Type 1 have been getting more attention lately and I think it is such a good idea to include them in the conference.
    I would like to hear about:
    -the importance of a social/support network for those with Type 1 diabetes, how beneficial it is to know and friend someone that is going through the same experience.
    -managing alcohol
    -type 1 and pregnancy and how to dispell the myths to your family
    -the mental aspects that living with type 1 presents, guilt, shame, depression, anxiety, etc.
    -the artificial pancreas!!!
    Good luck!

  20. How persons (adults or kids) can (relatively easily) achieve NORMOglycemia…if there is desire to do so.
    The technique is principally through proper eating (low carbohydrate load) and small doses of insulin. Not always perfect, but a far cry from what most of us with DM1 have settled for. We have every right to normal blood glucose, but few health care providers tell us HOW and many persons with DM1 are not interested in normoglycemia. The ADA dietary recommendations will never permit this type of normal blood glucose levels, so the information probably will have to come from non-traditional sources (starting with the best source: those with DM1 who do have normoglycemia.
    My values today are:
    86 mg/dL
    (7:30 a.m. to 8:30 p.m.)
    This is typical for me now (last A1c 4.8%…but years ago I and most of my acquaintances with persons with DM1 had purely 200’s and 300’s, every day, all day, with only an occasional normal BG level…which we had believed to be practically hypoglycemic!
    Anyone with interest can learn to have these kinds of values. I think there might be enough interest among adults with DM1 to fill a session (definitely led by someone with DM1…I (42 years with DM1) of course would be glad to do it, but there are undoubtedly others who could do it well also.
    Good luck at the next year’s conference!
    Dr. Stan De Loach

  21. For a Type 1 Adults conference I’d like to see these issues addressed:
    Getting the most out of your technology (pump/CGM)
    Staying motivated
    Coping with depression/anxiety/emotions
    Also, a big issue is that so many of us who are diagnosed with Type 1 as adults are initially misdiagnosed as having Type 2 and given the wrong treatment. There is widespread ignorance within the medical community that Type 1 only happens to children. How do we reach the medical community, and how do we help those who have been misdiagnosed?

  22. What would interest me:
    Dealing with T1 dx as an older adult: explaining it to your kids, health insurance concerns, available technology and “tricks of the trade” that longtime T1s have already figured out by trial and error.
    Menopause and diabetes – was already done with the pregnancy thing before dx.
    Also, dealing with T1 on top of other autoimmune issues.
    And of course burnout ; )

  23. Hi Scott – found my way here from Six Until Me. I’m in my late 20s, T1 for 11+ years. I would love to attend a conference track for adults with type 1…so here are some answers to your questions:
    I think an effective format would need to involve some sort of dialogue between audience and “experts.” We all want to learn from people who have specialized knowledge, but the fact is, as diabetics, we all have specialized knowledge and specific questions about how diabetes fits into our own lives. Because of that, I think a mixture of expert panels, and facilitated discussions would work nicely.
    The challenges I find myself facing most often are: how to deal with diabetes at work (disclosing information, what do disclose and when, how to handle situations as they arise)
    The topics I’d be most interested in learning about include the work issue (as I described above), but also things that I – and probably many other people – need to face as they grow up/older with Type 1 Diabetes: How to deal with finding good doctors/providers if you have to move, What exactly are our rights and protections under ADA (so often the only people who would know this are the very people we hesitate to share information with, namely the HR folks at our employers…), pregnancy and diabetes, the best ways to involve spouses or partners or children in your care…
    I’d also love to see some forum for T1s to get together and discuss/swap tips and tricks: things that have come up for me recently include CGM tape, different strategies for balancing insulin and exercise…I’m sure there are tons! It would be cool if people could easily find other conference attendees who want to chat about the same issues they’re facing: maybe different lunch tables with a “topic” that people could sit at, etc…
    Sounds exciting!

  24. Subject: Digestive Disorders. It seems to me that there may be other people silently stuggling with the caliac or other digestive disorders. I didn’t know about celiac until I went to the 2010 CWD conference in Orlando. After we discussed what I learned, my 19 year old son enthusiastically asked for a Dr. appointment.

  25. I would like to see some sessions specifically for the young adult category of 18-30 that helps to foster positive communication between the type 1 adult and their parent/spouse/care giver. The 2010 CWD Conference in Orlando a great presentations from Joe Solowiejczyk. He has a way to address both sides of the relationship with humor and healthy boundaries.

  26. I think having something on double diabetes would be great (type I’s with insulin resistance).
    I would also like to see something about guilt. i feel like there are a lot of issues with guilt about lack of control at some point in life and guilt over potential or current complications.

  27. Three cheers for “biased” and “cantankerous”.
    All of these comments are fabulous.
    I will be traveling to Europe next year and am in need of travel tips.
    I’ve learned so much from the blogging world and can only imagine what a convergence of minds planning this conference will produce. Can’t wait to know the time and place of said event.

  28. I have really enjoyed all contact with other type 1’s. I was diagnosed at age 12 and am now 53 – I have 3 adult children. I am an attorney and have lived all over the world. My particular area of interest is becoming a lobbyist for Type1 adults, to focus government interest in our particular issues – I would love to see more advocacy for things like “hmm.. I wonder why there is no cure? Could Avandia and Rezulin issues have been avoided if we had more of us advocating for safety? Are the pharmaceutical corps making billions a month on insulin, likely to give up that sure-share of market, by supporting a cure?” Let’s pull ourselves together and start making some noise!

  29. Thank you for your efforts. I am an old man who has had Type 1 diabetes for 54 years. Like many seniors, I am biased and cantankerous. I have a Ph.D. in plant/environmental science, don

  30. It would be fun to have a carb counting workshop. Create lots of items from scratch. Let us guess the carb counts and then share the correct answers. I think it would be a fascinating and educational exercise.

  31. Last year I attend a TCOYD conference. I found that the conference was minimal towards Type 1 and I was disappointed. This is the type of conference I really want to attend. My favorite part was checking out all the vendors. It gave me a change to touch and feel new high tech pumps and CGMS before purchasing.
    I am packing my bags and pump supplies as I type for the trip. I am ready.

  32. Last year I attend a TCOYD conference. I found that the conference was minimal towards Type 1 and I was disappointed. This is the type of conference I really want to attend. My favorite part was checking out all the vendors. It gave me a change to touch and feel new high tech pumps and CGMS before purchasing.
    I am packing my bags and pump supplies as I type for the trip. I am ready.

  33. “Type 1 Diabetes for the New Age”
    Discussion of Successful management for Adult Type 1
    Discuss topics as Pregnancy
    College Starts
    New life beginnings
    Fears of complications as we age
    Up to date treatment for type 1
    Internet communication/community age “get connected”
    I have had type 1 for 38 years and now 56 years old. With connection on the internet I am now only able to communicate with other Type 1. I may be 56, but my attitude towards taking care of my diabetes is similar to all that may be 20, 30, 40 or 60. I would be a great opportunity for all adults to come together to share our survival and self management.
    We are the “New Age” of Type 1 Diabetes. I feel confident that our survival rate will excel with education and communication.

  34. It’s hard to believe that there are not more T1’s like me who also have an eating disorder. While this conference might not be the best place to delve into it, an informational session for parents of T1’s of what to be on the lookout for, might be helpful.

  35. I love the suggestions so I’m just supporting my favs. But here’s a good guideline: if I can google it, go to a seminar, read a book, learn it from a pump trainer or online training, then it’s not worth traveling to a conference.
    I also totally agree that there needs to be a full time track for adults (that means above 30). I want to be able to avoid the “how to get pregnant” and the “parents of type 1” sessions.
    – ADVANCED technology uses- pump, cgms, etc that isn’t already in the books or the “official talk” from the makers.
    -ADVANCED carb counting – like mentioned -alcohol, restaurants, home made breads/cakes/ etc (not premeasured).
    -Symlin/Metformin/unusual treatments
    – Labile/”Brittle” Diabetics and coping skills/tricks
    -Psychological and Social discussions
    -Networking- especially if you can help us identify each other so we can keep in touch after the conference. Those in the same city, those in the same age bracket, those with similar hobbies, etc.
    -How to pick a great endocrinologist (what to look for, what standards of care should be used, etc)
    – Frustration/Burnout
    – I.H.B.T. (I Hate Basal Testing) and how to cope with it.
    – work concerns (as mentioned)
    And please don’t make me do group therapy (art, yoga, etc) with complete strangers. Please leave me an alternative informative session option. 🙂
    I really would love to network!! Hoping it’s in a central location so many of us could make it…

  36. Unless I’ve overlooked someone else who similarly suggested it, I will second Leticia’s suggestion about death concerns. I feel like I need to get a will, a living will, and all that sort of business organized, and I don’t really know anything about that stuff. Then there’s the issue of discussing all of this with family, and seeming very morbid or pessimistic when I feel like it’s the realist approach after having T1 for over 30 years. Chances are, T1 is going to kill me, it’s just a question of when, and having contended with the complications of my father not having made any preparations prior to his passing, I really don’t want my husband to have to go through similar legal hurdles when I die. I just don’t know what I need to do or how to start… and it would be nice to have a discussion about the fact that I feel like I have to worry about this when I’m only in my 30’s, and I’m watching the people around me more worried about what brands of diapers to buy for their kids. I find the whole subject very burdensome.

  37. Biggest challenge is not wanting to explain myself and my diabetes and why I do what I do to take care of myself (yes, I can have that ice cream!) This includes trying to find a doctor that respects me for what I know about ‘my diabetes’.
    I’d also like to have a better, organized community of adult Type 1s. Not parents of or friends of, but actual Type 1s. I haven’t found that yet.
    My favorite formats are panels and discussions.
    I’d like to see talks about:
    dealing with current and new relationships, when
    to bring up my insulin pump, etc.

  38. I forgot a few:
    1. Complications, when do they develop on average and what types of complications are common.
    2. Diabetes and fashion: Cool gadgets like pumps, meters, pens, etc are looking better these days. What else is out there to add glam to a black, boring, zipper glucometer pouch.
    3. Find out

  39. I would like to see sessions regarding
    1. Diabetes and sex
    2. Pregnancy (the good, the bad, the different)
    3. Healthcare coverage
    4. Death, life insurance, wills, funeral arrangements
    5. Differences in appointment protocol for different medical facilities
    6. What should be the standard number of visits to an Endo a year?
    7. Adult T1

  40. Thank you Scott for the post, and to everyone who has shared ideas. We’re listening and we will include sessions and social events designed for adults with type 1 for Friends for Life 2011.
    All our kids grow up to be adults, and I am keenly aware of our responsibility at CWD to remain relevant. We will.
    You have my promise.

  41. I love the idea of a conference for adults with Type 1 Diabetes. I’d very much like to attend something like that, and I hope the opportunity arises. I think discussing transitions of life with PWD would be beneficial discussions. Such as, going to college and moving away, starting a family, pregnancy, major transitions in life and how to deal with them.

  42. Wow, Scott-way to open up the flood gates! The fact that you have generated this much response is victory in itself!
    Like others have said, I think the mental aspects of diabetes is the most difficult for me. What exactly those “concerns” are can change by the day. I think far too often the physical aspects (although obviously very important) are considered while the mental ones are thrown to the side.
    I second the comments about how diabetes greatly can affect adult relationships. I feel there should be more discussion about as well.

  43. A lot of people have already mentioned the things I would like to add but there are some things I would like to second! I am 28 and am coming up to my 25th D-anniversary in October.
    1. Doing art therapy with Lee Ann is an amazing experience and something along those lines would be phenomenal.
    2. I have recently gotten very involved in yoga/meditation which is helping my blood sugars tremendously. I would love to meet with others who are also involved in yoga/meditation or do some sessions.
    3. Getting started on different types of exercise is a challenge because it can be stressful trying to figure out insulin/food needs pre/post exercise and it would be great to get someone with professional experience to speak with about this.
    5. I have been active in an adults support group for women with T1 and we had a session where people brought their loved ones. This was a wonderful experience-so a session to deal with issues that come up in relationships.
    In regards to the format of sessions, facilitated discussions would be great!
    I am excited to hear more about this as it comes together!

  44. I’m with the Center for Hope of the Sierras – we offer a unique residential treatment program for women and adolescents struggling with co-occurring diabetes and eating disorders (often referred to as “diabulimia”). I’d love to be involved with this conference and possibly send our endocrinologist and/or psychologist to speak on the topic and help open up discussion about dealing with this life-threatening dual diagnosis, issues, research, warning signs, etc. Keep me posted and best of luck!

  45. My biggest challenges relate to the emotional side of diabetes – largely the feelings of frustration, failure (e.g. every time that bloodsugar doesn’t do what I meant it to), and guilt. Guilt’s a big one. I do have the resources to deal with them, but to be able to discuss them in an open format with other T1 adults would be A-MAZ-ING! I think we all have so much we can learn from each other, so a facilitated discussion seems like a great approach.
    I really like the idea of discussing pregnancy and T1. Having been through it recently myself, I’ve realized how complicated it really is, and how many monkey-wrenches can get thrown your way. This would be a great topic! Again, the emotional side of diabetes is a good topic. Maybe also a discussion of the unique relationships we have with our doctors/pharmacists/etc. and how to keep those relationships humming so that we all get the most out of them. CGM use is also a good topic, since it’s still a fairly new technology. I think most of the ideas people are posting here are great!

  46. I struggle with eating healthy, making good carb choices, a severe fear of low blood sugars, and what the right amount of insulin is. I have been Type 1 for 25 years, and still have yet to figure out the proper carb/insulin ration, patterns, basals, etc. I take prednisone every day which raises my blood sugars, complicating the situation. I have some resources at my disposal, but not enough. I would love to have email support from my doctor and other healthcare professionals. In a discussion setting, I think that a facilitated discussion is a great way to talk about diabetes issues because it allows multiple people to talk and share ideas.

  47. Scott, great that you’re pulling together people’s ideas! A conference like this would be fantastic. A thought–I’d love to hear informal panels or talks from longtime PWDs who are successful in high-pressure professional, athletic or performance endeavors. They’re out there, and each one has incredible management skills they’ve developed to force the D to behave when there’s no choice–during the race or the concert or the big lecture. I’d be happy to participate (I am a professional classical musician) if there were others to share their wisdom too.
    Learning from PWDs that are thriving is what I’d like most…what are people doing right, and how can we share it?

  48. I would be interested as long as there aren’t any quack, holistic, “naturopathic”, homeopathic type discussions about how T1 can be “cured” by eating raw food / cat food / dancing naked around a drum.

  49. I went to FFL in 2007 – it was my first diabetes conference. I chose it because while I was 53 at the time, having gotten diabetes at 18, I still identify as a child with diabetes. And, as you said Scott, there’s nothing like being at a conference that’s just for t1s.
    I love panel discussions with room for audience participation. As for challenges, it’s the everyday-ness of keepin’ on keepin’ on and the feeling that so few understand the intensive work that goes into just keepin’ on.
    Like Lee Ann, I gravitate to socialpsych issues. How do we carry our diabetes as well, and as lightly, as possible? What can we do to get better at this from a heart- and spirit-place? And like Lee Ann, I’ve talked with Laura about possibly doing an interactive workshop that helps PWDs manage diabetes better, and with more emotional payback than payout.
    I think most of us know the basics and the meds, but I always love seeing and hearing what’s new and what’s coming.

  50. As a Momma to a T1 7 year old gal, I would absolutely love to hear from adult T1s about their experiences growing up after being diagnosed at a young age. What did their parents do that made a difference in their lives? What are some things we can we doing now, raising a kiddo with T1? I have a lot to learn from adults PWDs, because my child is and will be an adult with diabetes. There is a wealth of information that they can share with us as parents about emotional and mental health and well-being.

  51. I have never attended CWD FFL before — so forgive me if my ideas are redundant.
    I think that interactive sessions for the adults would be best. In addition to some of the experts mentioned earlier in comments, I think that it would be great to get participant led workshops. For example, a carb counting contest that could be combined with offering each other tips on “guesstimation techniques”. Also getting the adults to lead sessions for the parents would be GREAT. On TuDiabetes, I have seen great advice from type 1 “former kids” (i.e. adults) to parents on how to handle emotional issues, college etc.
    I think that giving organized forums for interaction would be better than lectures. We’ve got years of experience (some more than others), let’s share it with each other!

  52. I’m another one who rarely looks beyond the ‘Children’ tag, I must admit, but understand the reason for it. Similar feelings towards the ‘Juvenile’ in JDRF, although they are a terrific organisation that offer me just as much hope for the future as they do to actual juvenile T1s! I was diagnosed T1 at age 49 (now 51), a week before I was due to run a marathon. Having been a runner for 30 years I would love to learn more about how to cope with longer duration exercise as I can find very little and am still finding my feet (as it were!). Also, how to keep spirits up as an adult with T1 – support networks for T1s diagnosed in adulthood, humour in the face of adversity, and how to engage those adult T1s who may not even be aware of the DOC and what a tremendous source of cameraderie and information it is.

  53. Just reiterating what’s been said:
    Depression – the mental effects are HUGE for me
    Dealing with all types of exercise, including strenuous activities such as a marathon, triathlon, etc.
    Dialogue with other type 1’s

  54. There’s a huge list here already, but here are some additions/expansions…
    on the exercise front: I recommend involving Team WILD.
    on relationships: I think it would be really good to have a session about learning to share your bigD (It’s been all mine since dx’ed at 19, supported by my parents, but from a distance). My marriage failed in part due to both our lack of ability to share it. My current relationship is successful in part due to his attention & curiosity and my willingness to allow a little help. These are not easy lessons to learn. (for the growing up CWD’s, you might need one on taking over control of it from your parents first.)
    Sessions for T3’s seems like a great idea.
    Parenting while diabetic appeals.
    Wrestling the logs and charts would be a good technical session for me. I react well in the moment, but I struggle to make myself print everything out, analyze it, and make adjustments myself between appointments with my (fabulous) endo.
    I would like to see a casual gathering space as well as more formal sessions. I would see this conference as a way to finally meet my online T1 pals in person so an easy place to find each other and hang out a bit would be great.
    It’s getting late and I’m not making much sense anymore. I’m happy to brainstorm on the bikes anytime! 🙂

  55. I’ve attended CWD FFL for the past 2 years with my family (my older brother, my younger brother, and I are all type 1). My parents decided to go because of my little brother’s diagnosis (I’m 21 now and have been diabetic since I was 13, and my older brother has been diabetic for about 13 years now, I think) almost 2 years ago.
    I will say one of the most frustrating things about not being a parent or a kid at this conference is that I get over looked in many of the discussions. They ask for feedback, and ask the people who are obviously the “adults” or obviously the kids, and really have no clue what to do with me. The people running the discussions need to realize that there are type 1 adults in the audience who have input. I’ve felt so alienated at times that I simply left or I pulled out my DS and started playing games, which makes me feel guilty because I feel like that’s a waste of my parent’s money.
    Rant aside, I do want to say that there are many things I do like about the conference.
    This last go around, I liked the science/tech discussions/lectures, and I liked the young adults / transitioning into adulthood group. While I personally didn’t get anything out of it, I think it was a great starting point to acknowledging that we don’t stay kids.
    I’m going to agree with a lot of what has been said above:
    -I love the idea of a SO discussion group. I really think my SO would benefit from something like this, if he could come. I know he often feel helpless and ignorant about everything at times, and I think having a space where the SOs could have a voice would be amazing. They have Mom’s and Dad’s discussion groups. Why not one for SO’s?
    -I love the idea of talk about insurance and working life for adults. I would love to know all the legalities of what employers and insurance companies can and can’t ask, and what they do anyway to get that information (Like, I know they can’t ask about medical history during a job interview, but (and maybe I’m just incredibly self conscious) it sometimes feel like they can tell I have a pump and they just throw my CV in the trash as soon as they see it).
    -I love the idea of talking about the psychological aspects of having diabetes in adulthood. With all the stress of taking care of everything a “normal” person has to, having one (or two, or five) more thing(s) can sometimes be a breaking point.
    I’d like to add that I think it’d be nice to throw in discussion of living with more than one chronic condition, because many of us do (whether it be mental or physical, caused by diabetes or no) and how that extra stress can mess with being diabetic (and everything else).
    -I love the idea of more information on family planning (from dating to starting a family). How to make sure your SO doesn’t freak out when they wake up to find you passed out on the floor (I fell asleep studying, I swear!) to sex, to pregnancy, to well beyond when the kids are off on their own. Obviously this can’t be covered in one session, but it’d be nice to have lots of discussions! And just because people aren’t at a certain stage in life doesn’t mean that they don’t want to hear about it. (Like, I know I’m years away from personally starting my own family, but I want to hear about it. I want to know what to expect decades down the road, because I plan on being hear long enough to live it.)
    -I also love the idea of a “how to get involved”, whether it be by blogging or having a meet-up in your area or writing to politicians or what have you. Let’s face it–the “general” population’s idea of what type 1 is and isn’t is light years away from reality. Any form of activism or involvement is a step in the right direction.
    Thank you for allowing us the opportunity to give feedback and present our ideas!

  56. My first gut reaction to the name – CWD. I am not, nor was I ever, and my experience has never been as a CWD. Before I even get to the next line, and read all the great posts and experiences, and before I give it a chance, I’ve already blown it off. This is obviously not what CWD and the conference is about. From what I have seen here, it is about so much more, and deserves not to be blown away by the likes of me. It sounds like it is a perfect place to share info, experience, and learn. It is for and about all those PWD – persons with diabetes – children, youth, adults and seniors.
    I also think that the supporting networks – spouses, girl/boyfriends, partners and parents have been underserved. As much as we, as T1s, have been underserved by so many, those who support us get even less help. They are our heros as they help us through our lows, bear our highs, come up with ideas to figure out what’s going on with our defective bodies, and support us while we are on the phone in the middle of the night to our pump manufacturers. These our our often unsung heros, and I think that it would be great if they could connect as well, and find support, and others just like them. By sharing ideas, they might even become even better – for us and for themselves.

  57. Having attended Friends for Life twice in the past. I like the idea of an adult aspect added to it. I was there as a parent of CWD and also as and adult with t1. Now that my son is in college it would be nice to attend and focus on the adult end a little more. Dealing with issues parenting and having to deal with your own diabetes at the same time is a great topic, when do you have to put your needs first or your child’s. Insurance issues are always important and more than just medical. Technology advances are great for all.

  58. So many areas have already been suggested that I agree with. I may just be adding emphasis to the importance and gravity they have by mentioning them again…
    I find that the mental aspect of diabetic care is largely ignored by medical professionals. It’s such an important part of our care – even for us “veterans” – and having someone to talk to, who is trained on what we deal with and what our future can hold, would be so helpful.
    A network/mentor/buddy to talk to when you’re first diagnosed, and beyond, would be beneficial. There’s a lot of the feeling that “no one else knows what this is like”, and you feel like you’re carrying this burden on your own. Even just knowing that you’re not alone helps – and just because I tell you I’m okay, and act like it’s no big deal that I have to live with this every day, you can’t always believe that.
    Having a combination of experts and dialogue from the audience would be most beneficial for me, if I ever get to go to one of these conferences. 🙂 I want to hear the professional opinions on issues, but I also want them to be receptive to the feedback we can provide as patients.
    I would also love to hear more first-hand stories from T1s who have had successful pregnancies, and the doctors who work with this firsthand.

  59. Panels and facilitated discussions are great. Talking heads…not so great.
    We need more resources for people with TYPE 1 who already eat healthy and exercise regularly. What else can we do to continue to stay healthy as we age?
    We also need more information about pregnancy and women’s health.

  60. In terms of format, I think it would be great to have panel discussions and to invite folks who have dealt with T1 long term & short term along with medical experts to share their experiences. For example, if the pregnancy topic (GREAT suggestion!) proves to be popular, a panel of T1 moms and husbands who have been through it would be fantastic. My kids are 14 & 15. Both of my pregnancies were very normal and without complication, but I went through them before I was on a pump. It might be helpful to include folks on the panel who are controlling diabetes using different methods. Sorry to ramble.

  61. There are many challenges that are never discussed. But “female” issues such as the spike in glucose readings prior to menses, what about menopause? We are getting older and hitting that time soon (for me within the next 10yrs) I have no clue what to expect! Puberty with IDDM 1 was “so much fun”!

  62. If I didn’t know any better, I would think a “Children With Diabetes, Friends For Life conference” was for, well, children with diabetes. How hard would it be to call it “Friends for Life, a conference for Adult T1s sponsored by Children With Diabetes”? I assumed that the Children With Diabetes group was strictly for the under-18 set. I was diagnosed at 22 with T1 so I have never been a child with diabetes. And “Friends for Life” is so vague. It tells me nothing about the conference. Please, a little bit of marketing to new members goes a long way!
    Having said that – like others, I would like information on employment and diabetes; psychological aspects; good low carb recipes; a discussion of the pros and cons of vegan/vegetarian diets.

  63. I’ve had T1 for 43 years, so I can relate to everyone else’s comments about having been labeled everything possible and having been through every evolution of diabetes care. I speak nationwide on using natural ways to control T1. I would be VERY interested in helping organize this event. I don’t know what regions or locations are good for others, but can I recommend holding it in or near Indianapolis? It’s easy to get to, fairly central, and has a lower cost of living than other locations. (This would make holding the conference cheaper and also make housing and travel expenses cheaper for attendees.)
    For me personally, I’d love to receive additional info on the differences that exist in maintaining control after you’ve had T1 for more than 30 years. The playing field differs for those of us who have had it longer, and control becomes a much different issue. Not many MDs appreciate or recognize this fact, which makes it even tougher. I would also love to receive information on the natural approaches that are being used successfully. Most can easily be combined with mainstream treatments. I’d love to hear a balanced perspective on the raw food movement that is gaining so much momentum among the T2 population. It works for T1s, too, although it has to be approached very differently.
    As always, there’s a need to help diabetics deal with the anger that seems to infest everything we do. I see it in every person with diabetes I’ve ever known. Finding effective means to address this would be helpful.
    I look forward to learning more. Please let me know how I can help. Thanks so much!

  64. As a Type 1 diabetic for only 6 yrs (current age 33), my biggest challenges are dealing with site changes (little fat, seem to get a lot of kinked cannulas), the mental breakdowns when I have a series of kinked cannulas and I feel like I just want to go back to the insulin pen, and also dealing with the feminine aspect of blood sugar fluctuations based on my cycle. I do have most resources to deal with those challenges, but more contact with other Type 1 diabetics would be my requested resource.
    The format I prefer for discussing these challenges would be a facilitated discussion that is primarily focused on discussion by Type 1 diabetics.

  65. As someone who kind of sits between the children with (type I) diabetes and adults with (type I) diabetes I’m sure what I would like to see is a little different than some of the others.
    I recently entered the working world for the first time, and quit the job after the strain it caused on my diabetes management. A discussion on when to tell/how to handle diabetes in the work environment, what your rights are etc would be great. As a young woman with diabetes the future possibility of becoming a mother with type I is something I constantly think about. A session on preparing for pregnancy, managing diabetes during, finding the right doctors, your options etc.
    Another topic of interest would be introducing diabetes to the new people in your life friendships/relationships. In addition to that maybe a session for signifiant others; how to deal with PWD, their stresses/concerns, coping. Oh! How diabetes will effect me as I age. What is it like to be a senior citizen with type 1? Does medicare cover insulin pumps? Etc.
    I think all of those discussions would be best suited with a combination of presentations, expert panelists, and open group discussion.
    I know that it would be really exciting to attend something like this for any adult with type I. I really hope that it happens! Good luck!

  66. My thanks to everyone for sharing their thoughts. As Laura Billetdeaux mentioned, our “children with diabetes” are now adults with diabetes, and our shared goal is to ensure that CWD’s conferences, especially Friends for Life, remain relevant for adults living with type 1.
    From the many comments above, I’m confident that we’re all on the same page. We’ve had many of the sessions suggested already in previous years. I’d invite everyone to review previous conference agendas:
    (Please don’t get hung up on the page name — “Parents Schedule” is the schedule for grown ups, as opposed to teens, tweens, elementary kids and child care.)
    I’m eager to expand the programming at Friends for Life to include sessions and social events for adults with type 1. We will do our very best to ensure that everyone with type 1 who joins us next year will have a wonderful experience.
    And for you parents living with type 1, remember, this is a conference for the whole family. Your kids are welcome and will participate in their own programming, and we will include discussions for those whose parents have type 1. All kids are welcome, including the very youngest. (The youngest has been two weeks old.)

  67. I would love for parents of Type 1 diabetes to meet me. I have had diabetes since I was 5. I will be 44 in August, so that means I have had diabetes for 39 years. All this I owe to my parents, because without their care and support I would not be in the good health that I am. I have a full time job, a great husband and a wonderful 11 year old son! I have been on an insulin pump for 11 years, but my control was good before the pump,because of my mom’s training. I would like to hear about dealing with the emotional and medical issues of Type 1 diabetes in later years I am in good health now, but I do worry about the later years of my life. How will the diabetes effect me as I age.

  68. Scott:
    Tons of great ideas here – about the ONLY one I didn’t see yet – and certainly not a key issue- is dealing with your parents, & what your preferred “input” would be, when you’re now an adult with type 1; but THEY (especially moms) remember all too well your childhood yrs….I sat next to Gary Scheiner’s mom years ago when he was on stage, & she was mumbling “oh what if he didn’t eat enough dinner”! I turned to her & said – he’s in his 30s – will I ALWAYS be thinking like that?????…hmmmmmmm….

  69. 1.What are the challenges that life tosses at you most often? Do you have the resources to deal with those challenges? Do you need more? What would they be?
    Exercise and avoiding lows on the pump. I thought pumping would make exercising easier, but for me it is so much harder.
    I would love to have someone who is on a pump and has great success in unplanned and/or planned exercise.
    Low carbing and having tasteful meals that don’t involve a lot of cooking and shopping, ha!
    I would love to hear from someone who has had excellent success with the Dex and the MM CGMS and all the tricks of the trade.
    2.In talking about these things, what is the best format? Someone leading a session? A panel of experts? A facilitated discussion?
    I would love to have someone who is in professional sports talk address how they handle exercise with shots as well as with pumping.
    I would also like a panel of experts to give their two cents.
    3.What topics would be important and interesting enough to draw sufficient people to be worth offering?
    Exercise and the D.
    Low Carb cooking with simple and easy recipes and minimal ingredients without the use of artificial sweetners.
    How to obtain excellent/accurate readings on the CGMS.

  70. FEAR
    This is one of my big things. I do my best to take care of myself and my diabetes, but I lost 2 aunts to complications of type 1 at young ages… 52 and 45. How can I keep the balance, keep the fear out, live my life, etc. as an adult with type 1. Scare tactics aren’t good… motivation is good, but burnout is inevitable… How do you keep the fear from all the dreaded D death / copmplications from ruling your life? So I guess… anxiety issues with D… or a general mental health and D session maybe??

  71. I’d like to see sessions on employment and D: how to explain diabetes to employers; how to advocate for your own needs; being able to test/inject without having to be shoved off into a bathroom somewhere, for example; being able to have reasonable meal breaks; being able to eat at one’s work station.
    I’d also like to see sessions on being a low-income person with D, being able to eat a healthy diet on a limited budget, being able to exercise without having to pay to join a gym. Speaking of which, I’d also like to know if there is any way for a low-income person who cannot afford $200 a night for a hotel room to attend one of these conferences. Vancouver is close by, but would still require an overnight stay, which I simply cannot afford.

  72. first.thank you did a great thing here.
    second cwd or purple cows with diabetes,the name is not the issue.but i dont want to argue why its ok here.
    im with lee ann on this.mental health is the ticket.i can get “technical” anywhere.what i cant get is people to understand what life has been like growing up d and the constant struggle to stay sane.if i could grasp the mental part everything else would be o.k.
    free for all bull sessions with some direction.talks and lectures just dont hold my attention long. after the first yawn i might as well leave.

  73. Things I’d love to see at an Adults Type I conference:
    Dealing with the major transitions in life: college/independence, marriage, job stress, starting a family, etc.
    Acknowledging that even the old-timers sometimes need a reminder on the basics: features on the pump, regulating numbers and basals, meal planning, etc. (Goes along with the burnout comments others posted).
    Changes that happen as you hit adulthood. Since insulin is a hormone, all the changes as puberty ends will affect insulin levels, too.
    As a Type I with two siblings that are also Type I and have now hit adulthood, we’re all pretty excited about the idea of a TI conference that targets us. Great idea!

  74. I would love to see something on working out while diabetic. My bloodsugar always drops during and after. Something where actual diabetics talk about what they do and then allow for others to interact and ask questions would be great!
    Also dealing with what to tell coworkers would also be nice.
    A T1 conference would be GREAT! I can’t wait to be able to go. Everything is always geared towards T2.

  75. Wow, lots of comments here! Thanks for doing this, Scott.
    I agree with some of the comments above, and just want to place my vote:
    *Diabetes in the workplace
    *Pregnancy and diabetes
    *Alternative/integrative methods to managing diabetes – both the emotional and the physical (yoga, meditation, art therapy I saw above, laughter yoga was also up there, etc.)
    I like the idea of a facilitated workshop – no lecture. Make sure the learning is experiential/hands-on and leaves time to meet and talk with people.

  76. I’d like to see a session on Symlin/Metformin( or other “adult” T1 drugs, Metformin isn’t for type 1, but many type 1’s use it for insulin resistance.) There’s not enough knowledge of these out there..though they certainly aren’t for everyone, I know I’ve befitted from Symlin & think quite a few more PWD would use them, if they knew about ’em.

  77. I would second the suggestion of classes for significant others. DH dealt with diabetes for almost 10 years before we met. But now as a husband (of 4 years), leaning on his wife for a variety of things, we struggle to find the balance of how much support and encouragement (read: nagging) he needs to keep up with his management.

  78. Probably the biggest challenge is the unpredictability of what blood glucose will do given the variety of inputs to the equation. Food, exercise, insulin, stress, etc. Do I have the tools? No. A CGMS might be helpful, but it only tells you what the glucose level is doing, not what it’s going to do. Seems to me in non-diabetics the body either has a way of figuring this out or regulating it to the point where it’s not an issue.
    I would favor a mix of things, but definitely facilitated discussions. Probably with some sessions or panels, but with focus on the discussions.
    Topics? Current methods in management. Future research. Related issues such as how diabetes affects work and other life situations.

  79. Don’t have time to read ALL the comments already left, but I also submit my vote for handling depression, ie how to pull yourself out of depression enough to take care of yourself diabetically, or resources to turn to when you feel you just can’t do the diabetes thing all by yourself. Also: how to find a good endo that gets Type 1. Also: how to lose weight, given the peculiarities of our Type 1 bodies.
    Thanks for hosting this discussion! Can’t wait! I’m 41 – celebrating 30 years with Type 1 this year. (Hey, it’s better than the alternative for now…!)

  80. Like others, I am an adult with type 1 (40 this year, 33 years of type 1) and I’ve always skipped over reading anything about “Children With Diabetes” because I figured it didn’t apply to me.
    Reading these comments makes me think that an adults with type 1 track (and I agree about the age differentiations; I thought about a lot of different things in my 20s and early 30s than I did in my mid 30s, after I got married) would be great.
    As someone mentioned above, I’d love to talk to whomever about possibly speaking about pregnancy with type 1 from the actual patients’ perspective, as well as dealing with infertility and parenting. And as someone else mentioned, I’d like to know more about menopause and type 1 since it’s coming eventually.
    I also like the mentoring idea, along with specific social/networking events to meet other adults with type 1.

  81. I agree on a session for those of us that were diagnosed as adults. As a person diagnosed at 24, my issues were all about breaking habits and changing my lifestyle after my diagnosis. I don

  82. Picking up the pieces……how about a talk on what to do after an insulin reaction. How do you deal with people afterwards, when they ask what happened to you, are you still able to work, why are you back working today shouldn’t you go to the hospital or maybe a week off work will help you.
    Things to do to help you keep your job after this happens.
    Who you should talk to at work about this.
    Calming the worried coworkers.
    Explaining to others that this does not mean you are out of control or on the death bed.

  83. 1. We’re adults, so let’s talk adult things. Discussions about relationships, dating, sexuality, even marriage and Type 3’s.
    2. Something involving mental health, like the work that the Behavioral Diabetes Institute does.

  84. I don’t think there’s anything I can say that hasn’t already been said. I am CANADIAN and would like to get more involved, not a whole lot goes on up here.

  85. WOW this would be exciting, I keep asking the ADA in Nashville to do something for Adult Type 1 Diabetics. I have had T1 for 22 years, since I was 10. And I clearly remember ADA camp and the various weekend retreats that my family participarted in. But as an adult that support system is gone. I do not personally in my everyday life know any other T1 Diabetics. It would be nice to talk with others that have the same issues.
    Topics including: Explaining to the kids about Mom/Dad’s Diabetes, How to deal with employers that dont understand appointments/needing to eat?, It is more emotional as you get older with no one else around that understands what you go through on a daily basis.
    I can only image the feeling that I would have if I was in a room with many other ADULT diabetics. We grow up and are off to fend for ourselves with very little support.
    We cannot deal with this diease alone….we need the friendships and understanding of others to better about our situations.
    I feel like I could go on and on, the last diabetic that I saw were a bunch of T2’s at a Diabetes Walk and also T1 Kids….and I understand that…..but we need our support too (that scared little kid is still inside many of us…but now with no one to talk too).
    I would come in a heartbeat….to be around the strength of so many other T1’s would energize us!!

  86. Hey Scott!
    I think it’s great you’re working with the CWD folks on this.
    I second the idea for a session for couples. Marriage and diabetes has it’s own challenges (stress, financial issues, etc). I also think it would be great to have a large session on advocacy or how to get involved in the community/state/ federal level with diabetes legislation. I’d also love to learn more pregnancy and diabetes and even parenting when you have diabetes.

  87. I have been a type I diabetic for twenty years. as a child i attended camp and found that being surrounded by other kids dealing with the same issues as me was comforting and made me want to try harder to be responsible for my diabetes. now that i am an adult there is no camp to attend. i think a conference for type I’s would be awesome. being around other adults dealing with my same struggles encourages me to live a healthier life. i would enjoy topics such as diabetes and pregnancy, dealing with all the in’s and out’s of pump thearapy and CGM’s.

  88. I’m adding the comments I sent to you in my e-mail just so you can have them all in the same place.
    First of all Scott Johnson, when I went to FFL for the first time 2 years ago I told you that you would enjoy it, when I went last year, I told you that you would enjoy it… and now I say… I TOLD YOU SO!!
    Addressing the CWD branding, the organization is CWD but the conference is Friends for Life. I don’t think they need to or should change the name of their organization. They provide a great service to their community and I think their name is part of the reason.
    I have not been disappointed in the past by the sessions that I have attended. I have gone to technology sessions, pumping sessions, and sessions about diabetes burnout and other psychological issues. Sure, most of the comments are directed at the parents but the advice is the same (I just get to cut out the middle man). It may be just an issue about how the sessions are marketed. Making sure the speakers know there are Type 1 adults in the room and figure out a creative way to list them in the program. I also enjoy going into the exhibit hall. Not only for the free stuff, but being able to talk to the reps (who actually know what they are talking about) about their products and upcoming advancements.
    There is an important designation between the young adult track and the adults with Type 1. The first year I went was when they were trying the young adult thing. There is just a significant difference between being 23-24 and being 30 (yikes, I will be 30 at the next conference!!!) For example, several of us sat in on a conversation with Nicole Johnson about pregnancy. If you are fresh out of high school and waiting for your Prince Charming that is totally different than being married and desperately trying to get your A1c down. What are we looking at now as far as age designations?
    That same year they also tried a young adult hang out time (salsa dancing I think) that was too ‘young’ for most of us. I’m not saying I want them to necessarily provide us with an open bar, but input from the ‘grown ups’ might be helpful if they are planning a group activity.
    Another idea that might work is some sort of mentorship program. What if they matched us up with families that were interested and we shared a meal or coffee or something to prove that we grow up and that their kids will be fine. I want to go to learn, but I also know I have something to offer too.
    Some of us, myself included, like to keep what we do for our occupations out of the blogosphere, but I think some (or all) of us can provide a service to the participants at Friends for Life using our ‘real lives’. Scott, you know what I do for a living, and I am thinking it might be helpful to the high school or college aged participants.
    Those are my initial thoughts (especially those that have not already been listed in other people’s comments).

  89. Scotty, I have to say that although many children with diabetes don’t typically need to worry about insurance coverage because they’re covered under their parents’ plan, this is a huge and growing concern for adults with T1DM. And with employers trying to deal with runaway costs, the options offered during annual open enrollment may be very different. The issue is how is a PWD supposed to evaluate all of the options and choose the most appropriate one? Typically, employees have just a few weeks to decide on these things, and sorting through all the options and knowing what these mean is no small task, but could make a huge difference in the lives of adults with type 1 diabetes — both in terms of cost, and time spent on administrative stuff, too. This is tops on my list.

  90. Hi Scott,
    One of the Topics I would like to see covered is Technology and Diabetes, I am a big believer that technology enriches our lives (Thanks Steve) and with the introduction of new Pumps, meters, and CGMS, I would love to here from people which Gadgets make managing diabetes a little easier,
    Best of Luck with this Project,

  91. I think all the above comments offer some great suggestions. A session for significant others would be perfect– I know my husband would probably want to go.
    Not to rain on the parade, but a session on how to deal with fears, etc. that come with T1 would probably be good. This might be related to Lee Ann’s art therapy session or a session on burnout. For example, I think inspirational stories from people who have dealt with complications would be helpful. And something about how to deal with fears that your child might end up with T1 would be good too. I have both of these fears, even though I don’t have complications and my daughter is as healthy as a horse. Once you’ve had T1 for a long time, though, and if you’re a parent, I think it’s pretty common to always have it in the back of your head, you know? So some type of therapy session or something like that with tips on how to deal with these concerns would be great.

  92. #1) Challenges: Controlling Blood sugar via Nutrition and medication. How to deal with blood sugar swings, preventing highs and lows, preventing complications – and also dealing with complications once they’ve arleady occurred.
    #2) I think multiple varieties of presentation would be appropriate. I’d lean towards panels, Q&As, as many people with T1 attending the conference may be well educated and wouldn’t want to sit through a seminar, compared to getting certain questions answered by an expert.
    #3) Topic of most interest to me is overlap between autoimmune diseases and diabetes (thyroid, chrohn’s, etc.). Are they all caused by same underlying autoimmune disorder? What studies are there for % overlaps?
    44 comments and counting = there is some interest here.

  93. The topics I think of are Depression and Burnout. Both of those don’t get enough focus IMHO. Also, I would love a session about support. Via the web or locally and maybe even some ideas of how to start a support group. Peer support has been the single biggest help in my diabetes life and for those that don’t have a support network, they could learn how to start their own locally and/or get involved online.

  94. I would like to see something on using technology to better your numbers. I wear a pump and the Dexcom, but would like to use the computer to download the information and then be able to interpret all the data to adjust my basals, etc., according to the trends. It would need to be someone who could talk at a layman’s level though, not some techie whom I couldn’t understand:)

  95. Three cheers for sessions on pregnancy and sessions for significant others; I think they deal with a totally different set of mental and emotional burdens than those of us with diabetes, so it would be great to allow them to connect, share, and learn (and start planning for the Attached to a Grown Up T1 Kid conference 🙂 )
    Additionally, I would love to learn more about the various conditions that often co-occur with type 1 diabetes– Celiac, thyroiditis, etc.
    Thanks! And awesome idea!

  96. After 51 yrs with Type 1, and being female, as someone already mentioned, a section just for women. There is so little discussed regarding pregnancy & Type 1 and menopause as well. It’s a tough time for women enough but with the added diabetes, it’s even harder.

  97. I agree with some of the comments about the name – I would love to go, but wouldn’t feel part of it since I’m an adult. I was also diagnosed with type 1 after childhood, but will still will always have it.
    I was thinking of the types of sessions I think would be good –
    –tips on budgeting for diabetes
    –sex/dating and diabetes
    –how to get the most of your endo visits

  98. I could use some tips on insurance and money and getting coverage, especially as I transition into adulthood (I’m 21). Also on how to talk to insurance companies, both ones you have, and when you have an option of choices when getting employment, how to talk to insurance companies to make the best decisions.
    Also, a seminar on just plain tips around making life easier and less painful- I wonder about my injection technique, etc. How to coordinate doctors.
    I’m planning on going to the Candian FFL in 2011, since that’ll be much closer to me. I’m not willing to go to Florida.

  99. I don’t think I really have much to add in terms of topics. So many good ones have been suggested above. If you’re looking for multiple instances of the same topic, I’m happy to throw my most important ones out there: Type 1 and Pregnancy, the real story on diabetes and alcohol, diagnosed as an adult, what to expect from your endo, and maybe something on extended trips away from home. For example, I’m a PhD student and I need to spend lots of time in Italy for my dissertation research. I have so many concerns about this!
    I would LOVE to attend this conference. Can’t wait to hear more.

  100. The prospect of gathering with fellow type-1 folks is really exciting.
    Sessions on stage of life issues, relationships, parenting, aging with type-1 would all be excellent additions. Also, navigating insurance issues(beyond medical) would be interesting, too.
    I also think that building in a family component (so that it would be a vacation for those-in-tow) would help bolster attendance.

  101. My husband and I are both T1’s. He since 4 and myself since 18. We are the proud parents to one non-D son and both have pumps. We are VERY interested in going to CWD in 2011. I think that topics for adults should include:
    – Supporting spouses/significant others
    – Handling Diabetes in the Workforce
    – Insurance Nightmares! Trying to own your own business is such a challenge just because of health insurance coverage
    – Hypoglycemic Unawareness – From what I understand, the longer you have diabetes the more this becomes an issue
    – Family Planning/Pregnancy – Our endo says that it is just as important for the father to have his blood sugars under control when planning to start a family as it is for the mother and pregnancy is just a whole new struggle with D
    -Stress and it’s effect on Diabetes and maybe some coping mechanisms

  102. I’m sorry I wanted to add something. The first day on the job my son met another young lady in the training conference whom he saw testing her blood sugar. He caught up with her afterwards to introduce himself. She had just been diagnosed a month earlier at the age of 25. I think there are many who could benefit from great programming if time and money allowed.
    Another key point to all this will be how to get the word out to those young adults who are newly diagnosed. Their parents may not be as involved and googling they won’t pick up “children with diabetes”. Maybe that section could be called something different under the same big umbrella of CWD? This way marketing (if you will) could be put out there as something that the young adult or adult group could find and get information on. Obviously not everyone is involved in the blogging or message boards. Googling and finding the conference under a subset name might make it more accessible.

  103. I agree with Amy, I would love too see something about LADA-How to cope when diagnosed as an adult.
    I think it would be cool to have a class for spouses to talk about being a T-3.

  104. 1.What are the challenges that life tosses at you most often? Do you have the resources to deal with those challenges? Do you need more? What would they be?
    The main challenge for me is food. Diagnosed at age 20 I have always had a hard time finding out exactly what to eat to make my sugars be stable. I’d like to talk about the low-carb debate and bounce ideas off what other diabetics eat that works for them.
    2.In talking about these things, what is the best format? Someone leading a session? A panel of experts? A facilitated discussion?
    All three would be valuable!
    3.What topics would be important and interesting enough to draw sufficient people to be worth offering?
    Emotional issues, diet, meter accuracy, insurance/CGM topics, etc.

  105. My son has just graduated from college and after a crazy few weeks is off living in his first apartment starting his career. Interviewing was very difficult for him as a guy – no place to put his test kit. Then, the first week on the job with training among 60 other new hires in a conference like setting – no place for test kit for a guy. This week he’ll get a desk which will help. Problem solving these types of situations would be great.
    Also, I have to say there might need to be a big draw for him to take vacation days for a diabetes conference. He knows he’d benefit from it, but it’s another thing to take nearly a week’s vacation from the little vacation time he will have as a new hire. He’s a big sports’ fan – hint, hint. 🙂 I just don’t know if a diabetes conference would be a priority for him even though if he had the time and money and that was not a problem for him, I know he would go. It’s the time and money that would keep him away as a young adult.
    With important summer internships he was unable to attend the CWD during the college years. I’ve always wanted this for him though. It’s a great idea to continue to build this aspect!

  106. There are so many things that this conference could cover!!
    *The college years–Being away from Mom and Dad for the first time. Trust in others issues, what to tell your roommates, dealing with the anxiety of being on your own.
    * Career Years: Dealing with juggling a busy career with diabetes. How to figure out carb intake when at restaurants that don’t have carb counts available, balancing exercise with long commutes and a busy schedule.
    *Marriage years: Dealing with those issues that come up when you are in a serious relationship with someone.
    *Parenting years: Diabetes, career, marriage, and now kids. How to balance those busy years.
    Hope that helps!
    Scott and Traci

  107. I think a session(s) on diabetes and athletics would be great. As someone else has mentioned, the resources for distance training is limited (just completing a race is hard enough for some people, now try to figure out blood sugars. How much glucose do you have on you, do you plant people with sugar and/or a blood sugar machine in the crowd for a longer distance? Where do you put your CGM (if you have one) when you run? Not everybody is a distance runner either, we have swimmers and bike riders and people who like to hike and back pack? I think a panel of experts would work well with this idea.
    A session on diabetes and the work place would be a good idea-you handle things differently when you aren’t in school anymore. An overview of our ADA rights wouldn’t be bad.
    Finding an endocrinologist as an adult. I think the worst day of my diabetic experience was the day I got kicked out of my pediatric endo’s office. There is a huge difference between the two. Guidance on getting through it and what to expect would be great.
    Information on new technology and the companies with current equipment taking our feedback.
    Meter accuracy and what can we do about it.

  108. Hallelujah and thank the LORD!! I love FFL but I’m really jonesing for a conference that offers more for adults with Type 1! I mean, we all grow up right? The “adult” track at FFL is largely for the parents of children with diabetes, which I’m not. I think it’s beyond awesome that Jeff and Laura are seeing this need and trying to fill it.
    1. What are the challenges that life tosses at you most often? Do you have the resources to deal with those challenges? Do you need more? What would they be?
    I think the hardest part about living with T1 is the fact that NOTHING goes to plan. Everyone’s blood sugar reacts to everything differently on a different day. You bolus for a snack one day and hit it dead on and do the same thing for the same snack the next day and end up with a wicked high. Exercise is supposed to lower you blood sugar but it makes mine spike, especially if I get too hot. This kinda of unpredictability takes a huge psychological toll and can drive a person nuts!
    I have a feeling a lot of us deal with this type of thing but I don’t have anyone to turn to for advice. My endo just spits out the text book answers even when they don’t work for me. Having other folks with T1 to talk to who might have experienced the same frustrations and can give advice would be SUPER helpful!
    2. In talking about these things, what is the best format? Someone leading a session? A panel of experts? A facilitated discussion?
    I think some topics would be best covered in open discussion with someone leading. But others (like the future of T1 technology, expectations from pharma, updates on the newest research) would be better presented by experts and reps from the companies.
    3. What topics would be important and interesting enough to draw sufficient people to be worth offering?
    Honestly, just knowing that there will be other adults with T1 there would be a HUGE draw for me. I mean, I don’t want to spend $200 on a conference that only has one or two sessions that are relevant to me! Specifically, topics that I would be interested in are: handling diabetes in the workplace (especially difficult for me), pregnancy and diabetes, updates/future of diabetes tech, dealing with diabetes burnout (Amen, Kelly!), being a DIABETIC parent (rather than a parent of a diabetic), and I’d love to hear about the smartest way to go about choosing the right insurance as a diabetic and dealing with various insurance issues, etc, etc. Another thing that would be great is to have a mixer for all the adults sometime during the conference so that we can all mingle and chat!
    Sorry for the ramble but I really hope that this all comes together for next year’s conference. This is a HUGE void that has needed filling for a while. I’m so excited that there are folks who are actually on-board to make it happen!!

  109. Scott –
    Thanks for providing this great forum. I’ve been a Type I Diabetic since I turned 18 years old back in the the fall of 1985. I’ve experienced college, young adulthood, marriage and family all while managing my Diabetes. As most of us know already, each and every day brings challenges in just getting to the next day. I would love to sit in on a facilitated discussion that relates to something along the lines of burnout, or the mental health issues of getting to the next day. Thanks again for initiating this discussion for Jeff and Laura.

  110. Thanks so much for this Call to Action, Scott. Personally, I’d like to see something about LADA (for those of us dx’ed with Type 1 as adults). Also, I’d love one or more tutorials on “real” carb-counting for restaurants & parties, etc., some sessions on getting the most out of the advanced features on our pumps.
    Also lots on the psychological side — dealing with your partner & family members, etc. I’m available to talk directly to Jeff & Lauren if they want.
    Can’t wait to see how this turns out!!
    🙂 Amy

  111. I think the real thing to focus on is making the topics interesting enough to make the trip.
    The workshops concept sprinkled in with the topics might be the way to do it. Having an opportunity to have a bit of fun with other T1s who really “get it” is a real key to success.
    Another concept to think about might be a mentoring tie-in. Offer adults (especially those who started as CWDs/FFL) the option of mentoring children.
    For topics, I think others have hit most of them; just go to the forum here or any of the others like TuD and thrown darts.
    Fair Winds,

  112. It would be nice to see groups for people at all levels and stages of life. Having been diagnosed in 1958 does not make me any less anxious to know of the new and upcoming advances. It does seem like there needs to be more sessions geared toward adults, as many seem to be for teens or children. Looking at this year’s schedule, it would be hard to fill in all the hours as an adult T1.
    As the mother of an T1 also, once people are on their own and have to struggle to get their own insurance, this is a constant in any T1s life. Insurance and the difficulty of getting coverage without being in a group would be a good topic.
    For young women, difficulty getting pregnant is another issue. Taking fertility drugs and diabetes might be a topic, along with pregnancy.

  113. I think the 3 biggest issues for me are mental health (we all known D come with a ton of guilt) relationships/pregnancy and finances/insurance.
    I think a facilitated discussion and a “real person” led session would be helpful. Any experts should be someone with D, not a medical professional.
    I am totally on board for attend FFL next year, especially with more time devoted to grown up T1’s.

  114. Hey Scott 🙂
    What I would love would be to see the signing up process a little more clear. I’d love to consider coming next year, but coming from the UK is a HUGE commitment, especially when I basically have no money. I’ve found the site a little difficult to understand what EXACTLY it was I was signing up for, whether I would be welcome as a single adult with T1, or whether it was just for families. Or whether I’d even be allowed to come along since I wasn’t from the US!
    As a few people have mentioned they’d love to facilitate workshops, I’d just say that I’ve been facilitiating drama workshops for years now, and would love to offer a drama workshop, or help facilitate role-playing exercises if that was something people would be interested in doing.

  115. Burnout!
    Only we have to come up with a different title, because we’re even tired of the concept of ‘burnout; 😉 How about, “Where’s my meter?: How to stop ignoring diabetes” or “Re-discovering your Lost Diabetes Routine” or “A1c Creep and Denial: How to Break the Cycle”

  116. I had a great time at CWD and have no problem with the name. One suggestion I would make is to have some kind of adults with Type 1 event near the beginning of the conference to give us a chance to connect earlier.
    I prefer the science and tech sessions, but I realize not everyone does. Maybe a session about how to manage your own care as an adult – finding an endo that knows about T1, putting together a team, empowering yourself and learning to advocate in what can be a very discouraging environment.

  117. Scott-
    You and I have talked in great detail about type 1 teens who get lost in transition to being an adult with type 1. Sometimes they get lost for years, well into adulthood. I’d love to attend/be part of a session on that subject.
    I came VERY close to being a “lost” adult type 1, but with the help of some great Dr’s, I got back on track before the damage was done.
    And yes, I thank God/Budda/ who and whatever for that fact!
    Sessions on exercise and diabetes burnout would be fantastic, as would diabetes and depression.
    I’m all for a session for handling diabetes with humor, for obvious reasons!
    My time (and it was way to short) at CWD was amazing, and I’ll be back for the entire event next year!
    Thanks for the great post, and for getting the ball rolling on this!!
    Kelly K

  118. I am currently diagnosed as a T2, but insulin pumping, and waiting for insulin anti-body studies.
    I would love to be included in such a conference. Have some of the same issues as T1 (although currently diagnosed as a T2). I also care for T1 at my job as a healthcare professional.
    I would attend in a heartbeat if I was free/invited to attend (but don’t want to crash as I currently hold a T2 diagnosis).
    Love the ideas about differnet age group sessions, insurance sessions, and D and sports/exercise.

  119. I’d like to plug a repeat of Dr. Polonsky’s fabulous session on diabetes burnout last year. I think something like that could be expanded upon to include more concrete examples and workshopping from his diabetes burnout book.

  120. My biggest annoyance is as a “grown up” with T1D, I am constantly having to explain that I have T1 and diet and exercise are not going to make my lazy pancreas start working again. So maybe a session on “dealing with ignorance” could be interesting…people can just share experiences and how they react in these situations…
    I also think it would just be great to have sessions broken down by age group or life milestones (college, marriage, babies, etc) and just let people talk…you could have a facilitator to help begin the discussions.
    Also, in grad school, I had get my own insurance for the first time and that was incredibly overwhelming…you could do a session focused on insurance for 20-somethings.
    I second the exercise sessions ideas…I have recently gotten my diabetes under control but now I can’t seem to workout without my BG plummeting or skyrocketing.
    Lastly, I would love to see a “how to get involved” session for people who want to do what you’re doing; planning conferences, blogging, counseling at camps, fundraising, or whatever.
    I feel like I could go on forever, but I’ll stop here.

  121. T1 diabetes & pregnancy!!! For me, this is the biggest issue of being T1 and an adult.
    Dealing with ignorance of the public who think this is “the bad kind” of diabetes. I’d like some quick, two-sentence answers to some of the most common questions.
    And since this is geared towards adults–alcohol and how to bolus for it. I’m sure this is never talked about in a CWD forum. =)

  122. Thank you all so much for your candid feedback and ideas. Such great ideas. I will be doing the first precon mtg in Orlando next week, and am looking to expand our space so that we can offer a lot of the sessions you are proposing.
    Children with Diabetes, Inc. is the name of our company. As Lee Ann points out, that won’t change. However, the inclusion of content for adults with type 1 in our Friends for Life conference is so important! Jeff Hitchcock and I both have ‘children with diabetes’ who are now adults, so our own families recognize the need for the topics you propose. Marissa (Jeff’s daughter) is an RN. My son, Sam, is a senior at the University of Michigan. Adults with diabetes. (btw, we are all someone’s child, aren’t we?)
    Keep the ideas coming. And Thanks, Scott, for getting the ball rolling on the discussion.

  123. Super cool Scott, thanks for posting! As a certified laughter yoga leader, I would love to lead a laughter yoga session. It’s fun, it’s good for you, and it’s also a way to talk about managing stress with diabetes. I’ll be leading a session for the members of ACT1 here in NYC sometime soon, and it would be awesome to bring it to more of the d-community. 🙂
    I’d also like to see a session on intense exercise and diabetes. Maybe with pro athletes, but also with regular people who are doing amazing physical feats while managing diabetes. I find limited resources for marathon training with diabetes that is not 1. very vague advice, or 2. offered by athletes who have a huge support system behind them!

  124. Even though I’m an adult, I’ve been hearing so much about CWD over the past few years and I’ve been very interested in going. My husband and I have talked it over and decided that it will be our big vacation for 2011!!!! I’m really excited – and even more so at the thought of there being a few sessions planned specifically for us “old timers” with Type 1. 🙂 (I was diagnosed in 1979, at age 11.)
    I’d love to see a session that deals with diabetes and depression. I feel like that is a something that many of us deal with, but yet don’t actually discuss all that much. I know I tend to gloss over my depression and try to present a cheery face in the D-OC. For this kind of session, I think someone leading the session would work best – perhaps with time for a group discussion towards the end. (Of course, I could be wrong about that format – an expert would know better what session format would work.)

  125. What about diabetes in relation to jobs? How and when to let your employer/co-workers know. And how it can effect employment?
    I have seriously considered attending CWD next year. I’ve never gone before. But I’d really like to see more things geared toward those of us who grew up.

  126. I would be all for going to a conference for adults with type 1. Heck I want to go to next year’s conference even if they don’t change a thing! As I’ve started to take better care of myself over the past few years I’ve felt daily life is more stressful – discussing how to cope with that would be great. Also how to deal with fear of complications or living with those that adults may already have. I find the online support of this community priceless but there is something to be said about group sessions. I’ve learned this from attending the ACT1 support groups. I think it is important to stress that those children with type 1 do grow into adults at some point and there are those who don’t even get diagnosed until adulthood. While resources for children living with diabetes and teir families is extremely important, so are resources for the older population.

  127. It seems there should be a session on what to tell my friends about D. Just watched some friends go through an episode during a girls trip where friend with D lost control (drinking), started vomiting, passed out and scared the hell out of friends. Was airlifted to hospital and admitted for DKA. Friends felt helpless b/c they only knew “she had diabetes”. Knew nothing of how to help. Given that…how much should you share with friends and when should you share it? Would be a great session and I think would generate much discussion.

  128. I’m leaving it up to Greg to address what he’d like to see, but just another idea…
    This is rather self-serving, but maybe even a session for significant others of adults with type 1 would be in order. I know there are plenty of issues that arise to be addressed. If people are willing to attend such a conference, it might be part of a larger vacation with their S.O. or family.

  129. I would love to facilitate an art therapy workshop. I think a lot of people would benefit from such an experience, and the interactive, hands-on nature of it would make it different from traditional didactic sessions. It would capitalize on the emotional, cathartic aspect of FFL that I think makes FFL unique from other diabetes conferences.
    Besides that though, it seems that it’s common for people to struggle to be diligent about their diabetes without sacrificing quality of life, so a discussion about that would appeal to me. I *should* make an effort to learn more technical stuff about starting an exercise program, figuring out basal rates, and that sort of thing, but what I ought to make an effort to learn and what actually interests me enough to sit through a 75-minute session are apparently much different things, so I’d be far more inclined to attend psychosocial-themed sessions about mental health, relationships, etc.
    I would like to comment on the above remark that someone wouldn’t attend a conference titled Children with Diabetes since we’re adults with diabetes. I know the name is off-putting, but that’s the name of the organization, and that isn’t going to change because that’s their brand. It obviously creates a huge marketing hurdle, but in the end, it’s just a name, and this is our opportunity to have conference content that is designed for us. If we can get past that and embrace this opportunity, this could be something far more fabulous than anything other organizations who claim to represent us have ever provided. Having attended FFL 2010, I’m excited to attend again and hope that I, along with my fellow adult T1’s, can help build a conference that meets our needs – regardless of the name of the hosting organization.

  130. I honestly really like the idea of traveling and meeting a bunch of fellow adult type 1’s– I need more in my life! That being said, the two thugs constantly on my mind as of lately are starting a family and insurance. The two are related– what’s going to happen when my husband and I move to wherever our jobs take us? If insurance sucks, how do we handle the expenses for a high-risk pregnancy, my diabetes supplies, medications, a mortgage, etc? What if we want to start our own business? Personally I like hearing others talk but like the opportunity to jump in…perhaps a panel of experts combined with a discussion (more informal)?
    Lookig forward to this becoming a reality!

  131. I would love to see some of the big names in diabetes and pregnancy speak to the topic of healthy pregnancies: Dr. Lois Jovanovic, Cheryl Alkon, etc. As little girls with diabetes grow up into women with diabetes who may or may not want to start a family, this is an important topic for female T1Ds.
    Along these same lines, what about addressing diabetes and sexuality issues? Dating with diabetes, ED, etc.
    Other great topics for adults with T1D: finding and choosing insurance, financial issues, depression and anxiety, interpersonal relationships, dealing with knowing more about diabetes than our medical practitioners, burnout, going away to college or moving away from home, how to (or if we should) discuss it with employers, driving and other safe travel with diabetes…

  132. First of all, I would NOT attend a conference called “Children with Diabetes, as I am not a child but an adult. I wouldn’t bother reading anything after the headline “Children with Diabetes.” I’d love to attend a conference titled “Adults with Type 1 Diabetes — We’re not children anymore!”
    My biggest challenge in dealing with diabetes is money. Even though most of my expenses are picked up by the government, that still leaves things such as insulin pumps and CGMs. Lack of money also means I likely won’t be attending any “Friends for Life” conferences unless they’re held right in my own backyard and don’t require travel or overnight accommodation.
    I like facilitated discussions — not a free-for-all, but not a lecture given by one person, either.
    Topics for discussion? Too many to count!

  133. D-Kids Grow Up… Indeed. This aspect of a conference, or one of its own kind, is an inevitable reality. What might some of this look like? Maybe adjusting to work with diabetes. Moving out of state because of diabetes and not having that network of family and close friends in case a Low comes out of nowhere. Starting a family. Transitioning Endos from Pediatrics to Adulthood. Your own insurance. Formats… It seems like someone leading a discussion individually or as a group work well from what I’ve seen. But I’m no expert in that. Thanks for doing your part, Scott, and hopefully motivating many of us to get involved. I’m so looking forward to being able to attend the 2011 CWD conference, after being so close this year. But it’ll be here before we know it…

  134. Where the conference is going to be? I am diabetic since I was 12, now I am 42, so I been having all the diabetic “titles”: juvenil diabetes and adult diabetes, and since 12 I been having in mind what my mom told me a week after I get out of the diabetic coma and start inyecting myself:
    ‘you will put your insulin everyday as your father need to shave everyday before going to work”, haha, now I laugh, but it work at that time until now!…Good luck in the conference…

  135. I’ve been T1 for 40 years, the need for support on mental issues is much higher for me than the need for support on physical issues.
    I’d like to see, or even present sessions for parents, not the CWDs, that talk about the things that go thru our heads as we move thru life. How it really affects us. Honestly, if I was to do one of those, I would fully expect it piss off a portion of the audience, hopefully by the end, they might see a but of what we experience every day.