In a different post, there was a suggestion that we take on a larger role in the diabetic community through activism.
We are currently in the process of applying for a 501(c)(3) tax exemption. 501(c)(3) organizations are limited by law in terms of what they can do to lobby for things. You can read this article to become more familiarized with what we can and what we cannot do.
Also, though it may sound limiting, we need to pick our “battles” and as a result the Diabetes Hands Foundation (the nonprofit that runs TuDiabetes.com) has two goals that limit the things we engage on:
Connecting people touched by diabetes, and
Raising diabetes awareness: this can and does include informing others about the work other groups are doing in the diabetes space with different goals than ours.
So, what things would you like to see TuDiabetes do more? What ideas do you have in terms of how we could connect more people touched by diabetes or raise more diabetes awareness/raise diabetes awareness in a better way?
This is a great opportunity to also talk about something we have been working on on the Diabetes Hands Foundation: Change Diabetes Now
What programs get featured inChange Diabetes Now? Change Diabetes Now mainly features the community-generated content initiatives of the run by the Diabetes Hands Foundation:
It would be great to get some feedback about the work we are doing with our awareness programs and how do you think Change Diabetes Now is doing keeping in mind that we have very limited resources, we relay on online media and technology to do the best we can.
Maybe there is already something like this and I don’t know about it, but since there are 14,000+ of us spread throughout the world how about organizing groups to meet in key central areas for a day (perhaps around World Diabetes Day?) of workshops and/or socialization/networking?
Absolutely,
We have a Links section where we constantly keep adding links to new sites, blogs, communities and other online resources we learn about: http://tudiabetes.com/notes/Links
As I’m thinking about the question, do you know how many people visit TuD daily or weeky? Is there a counter on the site to track?
I’d like to see an effort to do diabetes awareness ed in the schools. Too many stories here about the isolation & alienation kids suffer in school. Perhaps an ambassador school team. I’d love to go to schools to talk to kids. Not counseling, just laying some myths to rest & raising awareness.
Gerri & Zoe; you’ve raised some interesting points.
As far as the diabetes awareness and perhaps other ideas are concerned, there is no reason why groups can’t be formed on Tu Diabetes for advancing these ideas and determining how many people are interested and willing to be involved in this form of social activism, provided it falls within the parameters of the organization’s mission statement.
I also think it would be good to formulate a list of diabetes-friendly counselors for individual therapy and for support groups. Many of us might be having emotional turmoil due to a recent diagnosis or ongoing difficulties in managing our diabetes and integrating it into our lives. People with diabetes suffer three times as much clinical Depression as the general population and I would assume this would be true for the anxiety disorders as well. In addition to those who might have a diagnosed mental illness or be experiencing emotional crisis related to diabetes many many more could benefit from having a safe and supportive place to talk about the impact diabetes has on their lives. Support Groups could be either professionally led or peer support only. Ideally, even the professionally led groups would be facilitated by people who themselves have diabetes. I’m sure there are many of us out there who are mental health professionals. Compiling a list of such groups by geographical area and posting it on here would be very useful.
What about some sort of “group” formed to help the TU members that are in the hospital at times. To get together and send cards, make phone calls, just be there for someone in a time of need and giving moral support. Just good old kindness and compassion and help ease some loneliness.
Can that be done, if the $ is coming from the members? To buy flowers, cards? Or does it just have to be something we would do on our own. Can we post a “Help” type group so others can contribute, as a group if they would like to?
We receive about 4,000 visits every day, give or take.
I think it is super-important to raise awareness about the availability of sites like TuDiabetes because it is a channel for people with diabetes to connect with others and realize they are not alone.
That is a great idea, Robyn: it sounds like a very nice complement to the work done in the Welcome Committee.
Want to start the group and let me know? I will gladly feature it on the home page for a while, so as to have other members learn about it and join it.
Great idea: perhaps we can start collecting the information using a Wiki (a tool to allow the collective creation/editing of information)… like Wikipedia.
We have set up a TuDiabetes Wiki and I just started a Wiki page for Diabetes friendly counselors. You can check it out (and add to it) here.
Judith what a wonderful idea. There has to be a way to help these people and raise the awareness of the organizations that serve them. Oh how I wish I didn’t live in a small mountain farming community but in an urban area.
Through Art,diabetes awareness can go from town to another in tours in museums and twon halls.Who will pay ?Drug companies and diabetes supplies firms.
International diabetes federation supports us wholly,can we be included somehow with the organisation to forward views and to inforce political agenda for diabetes care?
Can all foundations advocating for diabetes get together and form a local organization or even an international one ?
-I’m a fan of the idea of diabetes mentors. More-experienced PWDs have much to offer those newly diagnosed (as we see on this site). But so many people don’t come to the diabetes online community for help. They do go to grocery stores and libraries and churches and schools, however, as Gerri noted. The concept of “each one teach one” can be valuable. Can our online community venture out into the face-to-face world?
-What about training of lay people to teach about diabetes management? The J&J Diabetes Institute trains medical personnel–that’s fabulous, because obviously more education is needed! One cannot, however, become a certified diabetes educator without being a health professional and having clinical hours. Why can’t there be an international certified diabetes peer educator program? Well, I guess cost is one big issue! There ARE community programs that offer such training and services, but nothing coordinated on a large scale.
-Anything that will help PWDs type 2 become more vocal and active. Most of the online community and the activism is on the side of type 1. But type 2 is a health concern that affects many more millions and, unlike type 1 at this point, is preventable or able to be delayed in many cases. It’s also a disease of the older population. Are we doing a good job reaching those over 50? I think not.
-More affordable access to test strips for those who are not insured/underinsured. Of course, one problem with this is that the costs start to snowball. If one is finally able to test more often, one may learn that more medication (or different medication) is needed to manage the blood sugars. More expense! But finding out more about how blood sugars are running is a first step in better management.
-A stronger campaign is needed to encourage aggressive treatment of blood glucose levels in those newly diagnosed. The large clinical trials related to this studied type 2. Too many doctors and patients take a “wait and see” approach. Losing 5-7% of body weight, taking meds that target insulin resistance, and daily physical activity right away have benefits that last well into the years beyond. But people need HELP making these changes. Otherwise, we wouldn’t have so many newly diagnosed each year. Let’s help people make changes that work before they destroy their beta cells!
-Let’s “prove” that online support can help with the above. Can we get someone to study if daily participation in a diabetes community actually helps people lower A1C? If so, that would give us the proof we need to solicit funds and set up best practices for our site and others.
-Design more education programs that teach people how to accurately be their own diabetes management researchers. We’re told, often and in conflicting ways, what to do. Why not more “showing” of how to take the data we collect (blood sugar results before and after certain foods, doses, exercise) and use it to more confidently and successfully make changes in how we treat ourselves.
-Acknowledgment by major diabetes organizations that along with the physical markers of health–A1C, blood pressure, eye exams, etc.–mental health assessment and treatment be a part of diabetes treatment. Why is this essential ignored when we’re living with a chronic condition?!!!
-Partner with professional health organizations. The more they understand the real us, the more effective their professional interventions will be. I’m not convinced the professionals truly understand the power for good encouraged by the grassroots, online community. At the recent American Diabetes Association Scientific Sessions, there was a ton of good research and a ton of lifestyle changes that yield real, measurable health results. But there also was a ton of frustration about getting the message out and actually getting people to act on making changes. If health pros want to use their professional skills to reach more people and teach more people, why not more online involvement?
-More simultaneous global blood glucose testing! It connects and raises awareness on an individual and collective level. Plus, it was fun!
