In the Name of Research.

When I was at the JDRF Research Summit last month, the main focus of the presenters was the progress, current efforts and complexity of finding a cure for type 1 diabetes. There was also mention by Dr. Desmond Schatz (Professor and Associate Chairman of Pediatrics, Medical Director of the Diabetes Center and Director of the GCRC at the University of Florida, Gainesville) of the need for people in the diabetes community to get involved in research studies. And this makes sense. If doctors and researchers cannot identify the cause and possible factors that cause diabetes, they will not be able to cure it. I hate to admit that in my 30 years of living with type 1 diabetes, I have not participated in any research. But I changed that recently.

TrialNet had representatives at the summit and I approached them to see if there were any research opportunities for twins and type 1 diabetes. If you’ve never heard of TrialNet, “Type 1 Diabetes TrialNet is an international network of researchers who are exploring ways to prevent, delay and reverse the progression of type 1 diabetes. TrialNet was established in response to the Surgeon General’s Report Healthy People 2000. This report identified diabetes as a national health objective for the Nation. In response to the report, Congress created the Diabetes Research Working Group (DRWG) to develop a plan for diabetes research. One recommendation of the DRWG was to conduct additional research studies (clinical trials) to prevent type 1 diabetes.” “TrialNet is conducting clinical trials with researchers from 18 Clinical Centers in the United States, Canada, Finland, United Kingdom, Italy, Germany, Australia and New Zealand. In addition, more than 150 medical centers and physician offices are participating in the TrialNet network. Studies are available for people newly diagnosed with type 1 diabetes, as well as for relatives of people with type 1 diabetes who are at greater risk of developing the disease.” So of course they organize a study for type 1 diabetes and twins. If you don’t know already, I have an identical twin sister who does not have diabetes. And if you think about us developing from the same egg, having nearly identical DNA, having the same environmental influences both in my mother’s womb and growing up, not to mention having the same father who had type 1 as well, it makes me wonder why my beta cells destroyed themselves but not my sister’s. (Not that I am in ANY way wishing she had it too. This is strictly a scientific marvel) Both my sister and I gave blood samples that were mailed to TrialNet for the to test for certain antibodies related to type 1 diabetes. I was very happy to take part in research that will help the mission of finding a cure for diabetes. Even if I don’t see the cure in my lifetime, it would please me to know that I helped people after my time.

Research is very critical to finding a cure for diabetes. And who better to help with that research than those of us already living with the condition? Please check out TrialNet’s website (https://www.diabetestrialnet.org/index.htm) and see what clinical trials you would be able to participate in.  It will benefit the entire diabetes community!

image credit: JDRF

7 thoughts on “In the Name of Research.

  1. You’re not the only one! I’d always assumed I was “too far gone” as a diabetic to benefit any research. I really should check on any other studies, since it feels like they’re casting their net a little wider these days.

    At any rate, we’re planning on having L join TrialNet once she’s old enough. Gulp.

  2. My little sister did a TrialNet study, because she had 3/4 of the antibodies for diabetes, but she didn’t have it. After about 5 or 6 years of being in an Oral Insulin trial to see if it prevented diabetes, she was diagnosed.
    We had to wait a few weeks to see if she needed to go to the hospital, because she was diagnosed so early.
    I mean, right now her insulin to carb ratio is 1:50 for breakfast and lunch, and 1:45 for dinner, and she only takes three units of Lantus.

    Sorry for rambling, I just felt like my story pertained to the post. C:

  3. So interesting.

    I want my brother to get my niece and nephews tested but it’s their decision and they aren’t on board yet. I think TrialNet is doing great things and am very interested to hear your results.

  4. Pingback: Year in Review. A Tad Late. | The Girl with the Portable Pancreas

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