Title

Personal Stories

Amy Tenderich –T1D Visionary and Founder of DiabetesMine Innovation Days

The world needs trailblazers. Risk takers who see a problem and find a solution. Their vision takes existing ideas to new levels and empowers others to follow. The diabetes community is fortunate to have Amy Tenderich, DiabetesMine founder, who has used her experience to educate, open doors and elevate a needed change in diabetes healthcare and technology.

Amy Tenderich –T1D Visionary and Founder of DiabetesMine Innovation Days

Type 1 Strong had the opportunity to speak with Tenderich about her latent autoimmune diabetes in adults (LADA) diagnosis, patient advocacy, and the DiabetesMine Innovation Days, a leadership event series that helps pave the way for future discoveries in diabetes treatment and management.

Who is Amy Tenderich

Tenderich, the founder of the DiabetesMine Innovation Summit and DiabetesMine D-Data ExChange events and nationally known patient advocate, started her career as a tech writer in the San Francisco Bay Area. After her diagnosis with type 1 diabetes (T1D), she broadened her scope to include her personal experience by starting one of the first-ever patient blogs, DiabetesMine.com, which became one of the top health blogs in the country and worldwide. Over the years, she has also published independent research in several peer-reviewed journals and co-authored the book Know Your Numbers, Outlive Your Diabetes. That how-to guide helps readers understand health factors and testing to personalize their treatment plans. Tenderich co-wrote Know Your Numbers with Dr. Richard Jackson, then outreach director at the fabled Joslin Diabetes Center in Boston.

Besides hosting her own series of diabetes innovation leadership events, she speaks nationwide on digital health topics. Additionally, Tenderich is on the technology board group and peer support committee of the Association of Diabetes Care & Education Specialists (ADCES).

Tenderich’s Type 1 Story

During the last trimester of her third pregnancy, Tenderich’s doctor informed her that she had gestational diabetes and provided her with some guidelines to follow. Five months after giving birth, she experienced rapid weight loss, and on a return trip from Disneyland, her vision blurred. She suspected her contact lenses were the culprit until her husband urged her to see a doctor. Tenderich said she ended up in the hospital for ten days. Because she was 37, the doctors assumed she had type 2 diabetes and initially put her on oral medication.

After doing her own research and attending an in-depth class at UC San Francisco, she concluded she must have type 1. LANCET Regional Health reports that “up to 40% of adults older than 20 years with type 1 diabetes might have been misdiagnosed with type 2 diabetes.”

Two weeks later, Tenderich met with an endocrinologist who diagnosed her with LADA and put her on an insulin regime with very rough estimates for breakfast, lunch and dinner dosing. But in fact, she was in the honeymoon phase, so the insulin doses recommended were far too large, causing lows up to three times a day. “I thought I might have epilepsy, or that I was having a nervous breakdown,” she said. “I spent several days on the couch crying, and then I got up and said out loud, ‘There has to be a better way.’ I realized it was absolutely irresponsible the way they sent me home with this drug that can kill you and with so little accurate information — that was the impetus for me to do something.”

Enter DiabetesMine.com

Since she had no peer support and even less available diabetes education, Tenderich first decided to seek help from outside sources. Fortunately, a friend of a friend with diabetes clarified the basics of T1D over coffee. “She explained in real people’s terms what type 1 diabetes is and how you live with it.”

She said, “Type 1 is really about balancing three things: the food you eat, the activity you do, and the medicine you take. You’re constantly juggling these three balls in the air.”

That was the moment when Tenderich decided she wanted to help other people. At the time, she was a freelance writer for consumer technology in San Francisco. Concurrently, her husband attended a New Media event and encouraged her to become a diabetes blogger. “We set up this blog, and it sort of took over my life. With my journalist hat on, I reported on the news and wrote about everything I was learning, but I also added my personal experiences.”

DiabetesMine was a “gold mine of straight talk and encouragement for people living with diabetes.”

For 17 years, Tenderich owned and ran DiabetesMine.com, publishing daily on everything from new technology to advocate profiles to reports about various research and personal lived experiences. At first, a company called Alliance Health attained the site. Then in 2015, San Francisco-based Healthline Media acquired the blog, and DiabetesMine was part of Healthline Media for eight years, before being retired last spring; Tenderich said it was probably time, though she had much more to do with the innovation advocacy portion of DiabetesMine.

In 2008, Tenderich penned an open letter to Steve Jobs calling out how consumer technology was so far outpacing the medical world. The letter asked for help developing more personalized devices and wearables. “Can’t we get these (consumer technology experts) together with the people who design medical technology to make them more of lifestyle devices?” She added, “Listen to the patients. We’re the ones who have to wear these devices on our bodies 24/7. They should be more miniaturized, more attractive, and more engaging.”

The letter went viral and was picked up by several major outlets: Inc. Magazine, Business Week, Financial Times, and the Chicago Tribune, to name a few. “It kicked off this sort of national campaign to improve the design of devices for managing chronic illnesses,” Tenderich said. “My big push was that patients need to be involved with the design from the get-go, to make better devices for real life.”

Innovation Summit & D-Data ExChange

The 2008 open letter to Steve Jobs led to Tenderich receiving a grant from the California Healthcare Foundation to run an open-source competition for anyone with an idea for a product to improve the lives of people with diabetes. She worked with the prominent design firm IDEO, creating an international competition called the DiabetesMine Design Challenge. They ran the competition for four years and received hundreds of submissions worldwide, many from well-known universities. “Part of the idea was to get the next generation of designers into the healthcare space.”

After four years of the competition, Tenderich suggested hosting an in-person forum. The first DiabetesMine Innovation Summit took place at Stanford University in 2011. Tenderich invited patient community and industry leaders, clinicians, healthcare designers, and researchers. The event was such a success that she soon added the DiabetesMine D-Data ExChange, a gathering meant to serve as hub for all things diabetes technology and data-driven innovation. The first meeting occurred in a small classroom at Stanford with a 25-person capacity. It resulted in a packed standing-room-only coming together of dozens of people building solutions to keep their children with T1D safe. “We had all these people working side by side.” Even the Food and Drug Administration (FDA) attended and has had a speaker present at every event since.

Tenderich realized they were onto something and began to host the D-Data ExChange on a larger scale twice a year: in June just ahead of the huge annual American Diabetes Association’s Scientific Sessions in whichever city that is taking place; and in the Fall, typically in the San Francisco Bay area, combined with the DiabetesMine Innovation Summit (now called the DiabetesMine Innovation Days).

Innovation Days

Tenderich explained that the annual Fall Innovation Summit addresses broad challenges in diabetes care, and often showcases low-tech innovations like community programs, mental health solutions, access to clinical trials, and ways to navigate the healthcare system. The bi-annual D-Data ExChange, on the other hand, is razor-focused on technology: algorithms, apps, continuous glucose monitors (CGMs) and connected systems.

San Diego Summit 2023

Tenderich said the recent Fall 2023 DiabetesMine Innovation Days this past November was the best conference yet. “The presentations were so dynamic.”  She highlighted a featured panel on the use of GLP-1 drugs in type 1 diabetes — still off-label but showing amazing results. The drug is currently only FDA-approved for individuals with type 2 diabetes.

She said two stand-out demos were Genomelink’s new test to distinguish between T1D and T2D, and a company called Minutia’s stem-cell therapy. “They both look really promising.” The two newest mini-pumps were also demoed: OmniPodGo and Tandem Mobi

An important part of the Fall Innovation Days is the Patient Voices Scholarship program, in which ten diabetes advocates are chosen to attend on full scholarship. The applicants write an essay about their domestic and international activism efforts and why they wish to attend the DiabetesMine event.

“It’s really important that we always bring the patient voice,” Tenderich said.

Another way to do that is built into an initiative that Tenderich kicked off last year: featuring diabetes artists at every event. “Bringing in artists is a great way to express the lived experience of diabetes,” she said. One of this Fall’s highlights was an art fashion show presented by one of the three featured artists — a woman who expresses herself around diabetes through costumes that she designs and makes out of diabetes supplies. “It was such a great balance to all the heavy stuff we were discussing,” Tenderich said. “And it really brings to life the lived experience of what we (PWDs) are dealing with.”

A Catalyst for Innovation

The DiabetesMine events are gatherings of patient-entrepreneurs and advocates, pharma and medtech leaders, clinicians, researchers, regulators, designers and more — all with a hands-on role in innovating for diabetes. Alongside being a catalyst for data and technology innovation, Tenderich said she has also prioritized bringing health equity issues to the forefront. The personal connections made at the conference are among the biggest benefits for all, she said. “We always hear that the networking is clutch. It’s so rewarding when a major company hires a do-it-yourselfer or when I hear about collaborations like the creation of advisory boards, collaborations and pilot programs that were formed as a direct result of encounters at the DiabetesMine events.” In essence, Tenderich has created a space where the diabetes community can unite to share ideas and explore new technology and other innovations while supporting one another on their journey.

Are you involved in diabetes innovation and interested in attending the next event? Contact Amy Tenderich at info@diabetesmine.com.

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