Sorry to hijack your thread miss catlady. Iirc this thread is how I found your forum. When I’m not searching for the opinions of t1d individuals I like to lookup new t1d scientific research. Scihub is a great tool for that as well, for anyone who doesn’t have university access anymore.
The first study I came across was by miss faustman of faustman labs in the boston area. Phase 1 trials of bcg vaccine doses to t1d adults looked very promising. However she was admonished by the ADA for leaking results of the study to the media prior to an official ADA conference. I know funding for medical research is competitive. I don’t know how much of her behavior is calculated competition vs egotistical self-promotion. I noticed she took her 20+ years of BCG vaccine research and immediately jumped on the covid-research bandwagon. So my gut says she’s more opportunistic in nature. They were soliciting t1d children for a similiar phase 2 trial, but our gut says to wait on that given her track record.
A recent study out of korea showing cricket powder helped with betas. Big pharma can’t profit off of cricket powder so I don’t imagine more studies being done. Plus I read the species of lab rats used in the above study weren’t ideal, in addition the rats were given one big dose of STZ. One large dose doesn’t very well represent the slow onset of t1d, past ~2015 most t1d researchers believe multiple doses of STZ and a different rat species of rat is a better way to mimick t1d onset. So maybe they rigged up the study as much as possible and were funded by some company that desires to be the world’s supplier of cricket/insect powder. Who knows. Medical research is full of landmines and it is hard to tell the difference between genuine research and individuals with an agenda. Everyone has “an agenda” I know it doesn’t necessarily mean their research isn’t valid.
My other concern is that local research departments haven’t reached out to us yet. We would be very hesitant to sign up for any trial that administered medication. But I am surprised more t1d families aren’t asked to thoroughly document BC levels/insulin units/diet and any other health metrics that could be easily obtained with a wearable device and ~weekly lab work. I’d imagine plenty of t1d families and individuals wouldn’t mine to share anonymized health data if the analysis of such a large data set could help current/future diabetics with proper insulin management, or ultimately aid researchers find a cure or maybe even just what best dietary practices are.
Edit:
Related to the faustman phase 1 trial I mentioned above. It received a lot of media attention at the time so I figured veterans here may be aware of the faustman lab. But here’s a summarized link for interested parties. For more detailed papers use scihub.
Sounds like an awesome team you have. I don’t know what requirements are to be a diabetes educator. But in our experience they spent the most time with us and offered the most practical advice.
Are there many endocrinologists that are open to new clinical trials or research studies? The ones we spoke with were adamant that the 98 year old insulin treatment strategy is all there is, and recent diabetes management devices coupled with slight improvements in insulin are the best we will ever see.
I understand acceptance of diabetes is important for a diabetic to establish proper maintenance habits, but it would be nice if doctors would be more hopeful for a cure and mindful of new research.
Yes, there are great teams out there that stay on top of the research studies. In fact, we had a discussion at almost every visit with our endo about the current state of research and any improvements she saw on the horizon. Also, she varied her recommendations based on the literature she was reading and how she thought it applied to our situation. Great endo’s are out there, but obviously not everyone is going to be like that.
There are tons of new clinical trials and research studies ever year!
But I don’t think you should expect anything to cure it in our lifetimes. I am 16, I have been a T1D since I was 11, and I have no illusion: I will need exogenous insulin until the day I die.
There is no magic supplement that will make it go away.
However, I can tell you that I am doing everything all of my friends are doing. I do all the D stuff I need to do openly in class or in front of all my friends. I live a normal life. I just have to work harder at it than glucose normals. Your kid will do the same also.
I feel the same way, 55 years in.
If I magically didn’t need injected insulin, I might have to keep my pump and dexcom, just to feel “normal” !!
I have little memory of life without injections.