Meet Kelly Dawes, Advocate, ADCES Educator, and Founder of GrownupT1Ds

Kelly’s T1D Journey

Kelly Dawes was diagnosed with type 1 diabetes at age 12. “They originally thought it was the flu. There was a lot of chaos at the time; my mom worked two jobs,” Dawes said. “I lost 15 pounds in a week. I was in such severe DKA (diabetic ketoacidosis) that I couldn’t walk or talk, so they rushed me to the hospital. It was 1981, and they called it juvenile diabetes.”

“I didn’t know a lot back then. I wasn’t taken to the doctor often. I had one shot a day of mixed insulin,” said Dawes. “There were no blood glucose meters, and no A1c.”

No surprise, the one shot a day wasn’t enough to meet Dawes’ insulin therapy requirements. She grew dehydrated often and was constantly asking for water, to which one adult called her a flake due to several trips to the drinking fountain.

Instead of letting these setbacks define her, Dawes went on to become a certified Level 2 Paraprofessional Diabetes Educator through the Association of Diabetes Care and Education Specialists (ADCES). Her career began in dialysis care, which led her to become a nationally certified personal trainer specializing in diabetes and senior fitness. 

GenerationFit

Early in her career, Dawes became deeply interested in health and wellness. She founded GenerationFit, a fitness product company that promotes fitness as a form of medicine. When she hit her 20th anniversary with diabetes, she felt strong and challenged to be as physically active as possible. She realized that exercise was an integral part of the healing process and wanted to share her discovery with others.

“I came across so many people who were intimidated by the machines at the gym. I finally decided to manufacture user-friendly home exercise equipment so that anyone, any age, any fitness level, could be encouraged to stay active,” she said.

Dawes’ training focused on special populations like senior citizens, obesity and chronic conditions,” said Dawes. “These are the people I love working with. I understood the struggles.” 

Chasing Her Passion – GrownupT1Ds

During the pandemic, Dawes experienced feelings of isolation like so many others. “There were a lot of groups meeting virtually, but it’s not the same as the human connection,” she said. “I reached out to a couple of friends who had T1D and said, ‘Do you guys want to meet up and hang out?’

From there, GrownupT1Ds was born. Dawes founded the organization, which provides in-person social support meetups for adults living with T1D.

“We’re the first and only organization to serve the midlife type 1 population.”

Dawes said the group has grown across Southern California and plans to expand its chapters to other states nationwide. “I received a lot of messages from people seeking support.” Dr. William Polonsky, a friend of Dawes, said, “I need somewhere to send patients.”

After receiving nonprofit status, Dawes said GrownupT1Ds blew up from there. “In less than two years, we've had interest from Seattle, Texas, South Carolina, Florida, and New York. People are reaching out from all over,” Dawes said. “We would love to launch chapters everywhere.”

The pilot chapter of Grownup T1Ds is starting in Massachusetts. “We’re working right now with a woman in Boston who’s lived with T1D for 50 years.”

Dawes is forging ahead, trying to figure out the logistics of expansion. “We’re seeking funding partnerships and sponsorships,” she said. “And I’m having some wonderful conversations with some device companies and organizations, so I’m excited.”

GrownupT1Ds Growing Strong

With events all over Southern California, attendees with diverse backgrounds drive hours for meetups. “We have the span of longevity from three months to up to sixty years. People take each other in under their wings and support one another.”

The group offers connection, education and advocacy opportunities. “We’ve had people with cancer, who I’m able to connect with other T1D’s with cancer.”

During the recent LA fires, GrownupT1Ds hosted a donation drop-off for individuals with diabetes. “People drove over three hours to drop off supplies, and we even received donations shipped from Europe. The response was incredible,” said Dawes. “We collected everything, from insulin and pump supplies to sharps containers and Gvoke pens, as well as cash and gifts. We received so many donations that we were able to pass the overflow along to another organization supporting wildfire victims. It was truly heartwarming to see the community come together.”

An Underserved Population

“It’s obvious how underserved this population is and how great the need for adults in mid-life and older, because we’re finally living longer,” said Dawes.

Additionally, GrownupT1Ds address the unique challenges adult T1Ds face, which can include menopause, divorce, retirement, secondary illnesses, or the loss of a loved one.

Congressional Advocacy

Between her business and nonprofit, Dawes is an active congressional advocate for diabetes, representing ADCES and the Diabetes Patient Advocacy Coalition (DPAC) on Capitol Hill.

In her own diabetes management, Dawes experienced the frustration of accessibility and affordability and decided to fight for herself and others. “No one really seems to understand the severity of if we don’t get our insulin, and insurance has really become so difficult to navigate, the requirements, prior authorization, the meddling of pharmacy benefit managers,” said Dawes. 

“I advocate for both types of diabetes, for us to get the care we need. If these were handled properly, we would not only save millions of dollars but save lives.”

Challenges Met with T1D

Dawes suffers from a rare complication of T1D (neuropathy), a hearing impairment that requires hearing aids. “They are just now making a connection,” she said. Dawes also struggled using insulin pump cannulas. For several years, she tried different infusion sets, and still, her blood sugar would skyrocket, leading to hospitalization with DKA. “It was disrupting my life. I told my doctor I wanted to go back to shots.”

The cannula problem lasted several years until someone explained to her that she might have an autoimmune response to the cannulas – at that time, no one understood why this was happening. Another friend advised Dawes to try icing the area for five minutes before inserting the cannula to reduce inflammation. This solution worked, and she’s been able to wear a pump. “It has been a lifesaver for me.”

A Sister’s Misdiagnosis

Having a sister with type 1 diabetes doesn’t ensure you’ll receive the correct diagnosis. Despite the genetic components of T1D, the condition remains misdiagnosed. Dawes’s sister was recently diagnosed with type 1 diabetes as an adult after months of being told she was prediabetic and had type 2 diabetes.

“I kept telling her no, all her symptoms were telltale signs of type 1. Unfortunately, she went into DKA before she was correctly diagnosed.

What’s also discouraging is the lack of diabetes education for adults. “My sister went home from the hospital with all of these prescriptions and no education,” Dawes said.

Thankfully, families of children with type 1 receive days of training to learn the caveats of the disease. But some adults are sent home with a prescription for insulin and little to no guidance for treatment.

Building Resilience

Through Dawes’ supportive environment, she has become a resourceful and respected leader in the T1D community.

“I’m so thrilled with the momentum,” Dawes said. “I’m excited to open chapters in other states. This November, we host our annual diabetes awareness event. We also hope to have a collab event coming up with TCOYD soon as well.”

“As someone who’s lived with this for forty-four years, I just want people to know they’re not alone. You will be able to live long, happy and healthy lives. Diabetes is not going to keep you from doing the things you want to do. I know it’s terrifying at first, but ease into it; it’s going to get better.

To learn more about their programs or to get involved, visit their official website at grownupt1ds.org. If you’re interested in becoming a partner, contact Dawes at kelly@grownupt1ds.org

You can also follow GrownupT1Ds on Instagram and Facebook.