In our first Donor Highlight, we’re featuring longtime TCOYD supporter David Winkler. David has been part of the TCOYD community from our earliest days, and he is part of a small (but elite!) group of people who have been living well with type 1 for almost 60 years!
When were you diagnosed with diabetes, and how are you involved in the diabetes community?
I was diagnosed with type 1 diabetes in early 1960, at age 6. Next January I will celebrate my 60 year diaversary. Two cousins and numerous friends have T1D. I have been involved with several charities which support T1D research and better care for diabetics.
How did you first learn about TCOYD?
I attended one of the earliest TCOYD conferences in San Diego close to 20 years ago. I have returned to almost every conference since then.
What do you find most challenging about living with diabetes?
Low blood sugar is the most challenging. Highs aren’t pleasant, but not nearly as acute as the lows. Hypos can be frightening especially when I think I may lose consciousness, or worse. Another challenge is dealing with failed or lost equipment and insulin. I always have extra meds and devices with refills. One never knows when these critical supplies are going to malfunction or be misplaced. I’ve had pumps fail and insulin go bad. On one vacation, I almost threw my pump overboard because it wouldn’t operate properly.
What’s one positive thing that’s happened in your life because of diabetes?
I didn’t go to Vietnam. I had a high draft number. T1D may have saved my life.
You’ve also been instrumental in starting a couple of non-profits that specialize in diabetes research.
My most recent effort was the formation of the Diabetes Research Connection (DRC). Prior to that, I co-founded the UCSD Pediatric Diabetes Research Center to integrate diabetes care from Rady Children’s Hospital into adult clinics, and to support basic and clinical research.
In 2012, a few professors from UCSD and I arranged a TEDx talk regarding the latest research in T1D.These same professors said the most significant challenge for newly minted scientists, who want to pursue a career in T1D research, is getting initial funding. Many have creative, out of the box ideas to prevent and cure T1D, but they can’t get that first research grant. Together we formed DRC. We assembled our 80 member Scientific Review Committee comprised of the top T1D researchers in the country to review grants requests. Then we formed a fundraising platform and let the T1D researchers know about DRC as a grantor. We have funded 20 projects and are optimistic about continued growth.
DRC supports the earliest phase of basic and clinical T1D research to address prevention, cure, care and complications. As an example, we provided initial funding for the use of CGMs in hospital. That ought to become the standard of care; however, evidence must first be provided to the Joint Commission (on Hospital Administration) that CGMs will yield better outcomes.
About 90% of research fails, but half of our fully funded scientists have had papers published in reputable journals and 3 out of 10 have received $1 million, or more, in follow-on grants from the National Institutes of Health and private foundations. Our charity is really working. Check out our projects and news at DiabetesResearchConnection.org
How has TCOYD had an impact on your life?
TCOYD has kept me on the cutting edge of T1D treatments and enables me to talk to others affected by it. TCOYD’s relatively new ONE conferences provide excellent updates on T1D with the great camaraderie of other T1Ds from across the USA and foreign countries. For example, Jeremy Pettus recently spoke about GLP-1s and SGLT-2s. This provided enlightening and useful information. Being with other T1Ds is synergistic and encouraging. I have left every seminar knowing more about T1D, feeling better about having diabetes, and being more motivated to take even better care of myself.
What inspired your contribution to TCOYD?
I want to support the great folks at TCOYD who educate T1Ds and their families, and have a positive impact on their health and attitude. It’s important to let T1Ds know they’re not alone. The TCOYD staff help T1Ds learn ways to better control the disease and deal with it in a much more constructive way.
If there was a cure for diabetes tomorrow, what would be the first thing you would eat?
Chocolate cake with ice cream!
What’s the best advice someone has given you about living with diabetes?
When I was diagnosed in the 1960s I was told I wasn’t going to live past age 30. The Joslin Clinic at Harvard has said only about 1 in 10,000 T1Ds born before 1960 has lived this long. Fortunately, life for T1Ds is getting much better due to research into better devices and medications.
My endocrinologist knew well in advance of the DCCT (Diabetes Control and Complications Trial) that normal blood glucose levels made sense. He said to me, “There’s no reason you can’t live a long life if you normalize your blood sugars as much as possible, have a healthy diet and exercise.” His advice was clairvoyant. I believe those are the reasons why I’m still here. My advice is basically the same – Exercise, eat healthfully and do the best you can to normalize your blood sugar and achieve the maximum time in range.
If you would like to make a tax deductible donation to TCOYD, please: visit tcoyd.org/donate.