Your ideas to further TuDiabetes and reach out to more people

Maybe this should go in the geek forum, but the highest value I see here is the potential for information - that is, the availability of raw data and the ability to mine it for patterns. Saying “it’s not the same for everyone” is too dismissive - it is the same for subsets of us. So in my own case, a T2 with ok cholesterol and good BP, I want to know how others are doing with their stats and what they eat, do, etc.
also if I see a good post I want to know whetherr they have a medical team that agrees or have had to go rogue. if i can find a med team to fit my needs (primarily for info) through others that have them, that’s a huge benefit from td.

What about getting the list of CDEs who are around the country and contacting them? They could be a resource in local communities and doctor’s offices. Plus they could at least put out materials about tu in the endo offices. If we do it right they might make part of new diabetic’s training to talk to patients about online options for connecting with other diabetics.

Hi Manny and many thanks for all you have done for all who are affected either directly, or indirectly by diabetes. Any journey begins with a purpose or objective regarding the end result. What this means here is the “Captain of this ship” has to decide exactly what the objective(s) of tudiabetes really are, and like any relationship move and change to stay on course as they see fit.

After being told by numerous people (doctors included) that I should help others with diabetes my goal was to help just one person. Now that I have completed that, my goal is to help just one more. The bigger question is as a group, how do we change the mindset of a public who are largely ignorant (and rightfully so) about diabetes because it is EXTREMELY COMPLEX.

We know this can be done because there are numerous examples (Mother Against Drunk Driving, Civil Rights Movement, Women’s right to vote and work etc.) that changed the way people think. The bottom line is that we need a list of priorities, and an effective way to market them to achieve our goal(s) whatever they may be.

The job is tough because we are fighting not only diabetes, but ignorance and a level of power and control that is similar to the examples I listed. I mention this because history shows us this CAN BE DONE!!! In the mean time thanks so very much for all you have done, and now we must plan our work, and work our plan.

Keep up the excellent work
Love Always
The Anonymous Diabetic.

Anon,

Do you have any suggestions for the goals Manny has listed?

Thank you Manny - you are so dedicated and have done so much for all of us. Bless you!
So many good ideas …

Possible local initiatives:
Outreach to various populations…schools, homeless, etc.
Creating a Peer or Mentor program…sort of a "buddy system"
Contacting CDEs and Endos to provide them with TuD info to pass on to patients

Possible national/global initiatives:
Soliciting a quantitative study of TuD participants in terms of how involvement here correlates to improved control

Thinking nationally or globally, this particularly caught my eye (from Kelly): “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.”

This, for me, gets closer to the “800 pound gorilla in the middle of the room” that I would like to see TuD address in some way…but whether it falls into your two goals is not for me to determine. The “gorilla,” IMHO, is that there are many, many, many, many diabetics out there who are suffering physically and mentally because of the narrow AMA/ADA medical advice they are receiving. Knowing where I came from (physically & mentally), I shudder to think where I’d be now if I had not found alternative information. Why is our disease seemingly OWNED and held hostage by the medical establishment, while those whose advice has helped so many of us (like Bernstein, Mary C Vernon, et.al.) are treated like kooks? What about an organized campaign to convince family practitioners (who are treating an alarming number of diabetics), endos, CDEs, and the public that many people do very, very, very well using “other-than” ADA guidelines (e.g., low carb, raw foods, etc.). This, of course, would be made even more powerful if we gather qualitative and anecdotal evidence from TuDers. Do we really want to just leave the discovery of TuD - and the many different alternatives that have worked for lots of us - to chance?

Maybe you could try chilling out. Talking to a parent of a 10 year old type 1, they are measuring his food, setting 2 alarms for every time “they” say to test. His A1c was 9 and they are hoping to bring it down–good luck! I’ve had type 1 since 1967 and 40 years ago a specialist told me a great, unique thing to do. He said over the next 2 weeks, write down all you eat, then what you really wanted to eat. Then we met again and reviewed my lists and 1st made sure I was getting all my base foods. Then we went over concentrated sweets and cut back on how often and how much. This was a big help and reduced cravings. Living on a farm, I loved meat and potatoes and anything from the garden and fruit trees, when in season. Gradually we came up with a new variable calorie amount, requirements for food groups by the week, that gave me both choices, yet still firm restrictions. I never met a doctor who wanted to move into our house, to make every decision for me, so this was a big step in “me” living my life with diabetes. I realize this is somewhat against the flow, my last A1c was 6.8 Idon’t know lf you will print this or not, but through diferences we gain knowledge!

I would hope to see more support for those of suffering with complications. The complications are devastating and there are not too many people that we can reach out to without feeling as if our complications are our fault. We need to celebrate the survivors with or without the complications. It is a degree of fortitude that we all share that we manage to survive for as long as we do, with our without complications.
Send us the message that we all matter, because we do, each and every one of us.

Thank you everybody for all the ideas, they are great.

Yes, everybody matters.

To Create TUDiabetes Business Connect / Online Store or Market Place :

Let us sell / publish our self designed Diabetes Stuff or anything related to Diabetes Products made by Tudiabetes Staff.
We can give 1-5 $ of each sale to the diabetes foundation / charity etc,…

We as Diabetics are creative & are the best product designers! Let us design & influence the market.!
I am willing to support you on this & lead the group… ( I am designer & product development manager my self )

We already saw so many fantastic creative work from Tu diabetes members…

What do you think…

You might want to consider T-Shirts. I would buy one. And Hats, I would get one of those to.

Great idea Gerri:) I would do this as well.

Hello,
Carb counting is the most difficult chore for me. Good control hinges on accuracy. I would like to see a post with pictures of food in a smorgasboard style or on a plate. Comparing posted carbs to my count would be a great training tool. Just a thought.
Sid

I have thought about this for a few days now…I really think there is such power in numbers and that we as a group should try to bring together voices to move society on issues that we as persons w/ diabetes see more clearly. These issues can be as specific as healthcare reform or as non-specific as expression of a more humanistic view of social issues.

I love that Tu provides artistic outlets for members…and I think art, music and story are powerful tools in raising awareness and changing hearts. Would like to see creative ways of getting these images and thoughts into the cultural mainstream. T-shirts, billboards, ads in magazines, etc…of course, we would need to raise money for these.

Providing information and opportunities for members to come together to work on issues can be another way that Tu could support change/activism while still functioning w/in the foundation’s goals. Maybe a Political Activism Forum? dedicated to organizing and activism…could summarize relevant political activities related to diabetes, links to groups working on issues, and easy ways to contact government officials, etc…the membership would help build it just like all the other forums.

Hi Patricia,
Thank you for your comments, all great points. We are going to meat next week to see how we can incorporate most of the ideas in this tread into our programs, or provide clear outlets for them.

Since you and other have mentioned healthcare reform, witch is a very important issue for us in general, I wanted to share a community we learn about this week in a meeting with the Public Health Institute, they launched not too long ago a community on Ning for one of their programs: Dialogue4Health. We will probably put a link on the main page so it is more accessible, but we thought it could be a good start.

We can also open a discussion in out forum (if there is not one already) we can feature it on the home page about healthcare reform. Please let me know if there is one already exists. We all have to remember to be respectful of other member’s political views :slight_smile:

About your idea to get the images of out art program out there to the general public I think it is a great one. Today is actually the last day to contact Zoey and Dereck from the Preexisting Condition Art Show, to send them your artwork so they can include it on their traveling show about diabetes. It is a great opportunity for us… I have only received answer for…, today I will be sending the link with their info the Zoey and Dereck… the rest can contact them directly, it is probably less complicated. :slight_smile:

Thank you again too all of you for your comments, we will be following up next week about this. :slight_smile:
Have a great weekend.

Thank you very much everyone for all the phenomenal ideas.

We sat down and analyzed everything everyone said and came up with a series of action items to address them:

Dealing with diabetes supplies costs and access
We just created a new category in the forum, to help facilitate the free exchange (for sale items need to be posted elsewhere -eBay, Craigslist, etc.) of non-prescription diabetes supplies:
http://tudiabetes.com/forum/categories/free-unused-nonexpired/listForCategory

Dealing with discussions about topics such as healthcare reform
We firmly believe in the importance of discussing topics such as health care reform in the community, because of how closely they touch us. However, we are torn between that and what we see as our obligation to maintain an environment where respect between members is at the core of our values. Since discussions where politics come up (like health care reform) have a history of ending up becoming flame wars, we are exploring other ways to address the importance of holding these debates while upholding our community values.

Proving that online support helps
This is a very important point we have been working on for several months. VERY SOON, we will be making an announcement about a collaboration we are initiating with a prestigious academic institution that we hope will result in us being able to QUANTIFY THE BENEFIT the community can have on our health.

More simultaneous testing (another 14,000 people testing at the same time)
Working on this diligently for World Diabetes Day… Besides this, we continue to foster daily public testing on Twitter:
http://tudiabetes.com/group/twitterbetics/forum/topic/show?id=583967%3ATopic%3A755528

Extending the role of DHF Ambassadors
We are soon going to have a fundraising campaign. Some of the ideas that were discussed earlier (having school ambassadors and outreach/organizing for those less privileged) can be explored and developed through our Ambassadors program once we have the necessary funding. This has been the major hurdle as coordinating volunteer efforts takes a lot of time and resources that we have not had.

TuDiabetes Care Team
Robyn’s idea was great: having a group to help members that are in the hospital, that are going through a particularly rough time, needing moral support and/or perhaps undergoing complications. We have thought that we could re-cast the Welcome Committee as a broader “Care Team” to welcome people who join the community and also show care to others that need it most at times. How does this sound?

Diabetes awareness campaigns
We see “Mental health and diabetes”, “Healthy eating” and “Complications” as three great candidates for awareness campaigns to take place later this year and in 2010.

Carb counting
We have some ideas which (pending on funding) we will be able to develop to make learning about carb counting fun and educational… more to come about this, we hope!

Design and Diabetes
DiabetesMine.com has developed a great design challenge focused on diabetes that we encourage everyone with great design ideas focused on diabetes to enter:
http://www.diabetesmine.com/designcontest

Promotion

  • Reach out to CDEs and Endos around the country: if you have a CDE or Endo you want to tell about the community, please check out this discussion:
    http://tudiabetes.com/forum/topics/tudiabetes-4x6-cards-for-cdes
  • Street team: wearing shirts/hats, hand out flyers with diabetes awareness/research. We need to expand this idea further. Who would be involved with this?

Diabetes Mentors
This sounds like a beautiful complement to the concept of meetups/community, as it happens in a more individualized setting. There is a partner group that we will explore working with in order to get people interested in becoming a mentor certified and getting this program rolling.

Hope I didn’t miss anything.

Again, I wanted to thank everyone for your thoughts and contributions!

Thanks, Judith!

As always, love your willingness to embrace big ideas!

Because time and funds are so precious, I hope the team concentrates on the ideas that tudiabetes could “own” and puts less priority on areas that other groups already fulfill.

The following, IMO, have the most potential to meet the foundation and network mission, and truly create and influence positive change:

Support & connection for people living with diabetes
TuDiabetes Care Team
Diabetes Mentors
Focused diabetes awareness campaigns. (Love the point of having focus. Diabetes awareness in general is a very broad concept. But “Diabetes & Mental Health” is lovely, needed, and specific.)
DHF Ambassadors

Buy-in from health influencers
Reaching out to health care pros (they are, so far, suspicious of the value of social networking. But I say more power to the patients!)
Proving that online support works (this is exciting!!!)

What about weekly Skype sessions for the TuD community so that we all can meet. First Week Meet The TuD admins. The next week meet with an author of a book dealing with diabetes. A carb counting class etc etc… Like Oprah she reaches millions around the world with authors from her book club… Just a thought … Oh and a biggie Diabetes & Mental Health

Doing weekly chat sessions is quite an undertaking, but we’ll not discard them.