Title

Personal Stories

Diabetes Dad, Author and Activist Tom Karlya

To celebrate Father’s Day, T1D Strong interviewed author, advocate and Vice President of the Diabetes Research Foundation, Tom Karlya. Best known in the diabetes community as a Diabetes Dad, Karlya imparts his wisdom, philosophy, and ardent belief that a T1D cure is due.

Diabetes Dad, Author and Activist Tom Karlya

About Tom Karlya

In 1992, Tom Karlya received a 911 message from his wife to meet him at the hospital. His two-year-old daughter, Kaitlyn, was in the ER after just receiving a type 1 diabetes diagnosis. His little girl looked up at him, connected to IVs in both arms and said, ‘Daddy, fix.’ Karlya vowed not to leave one stone unturned until they found a cure.

Karlya credits his wife, Jill, for getting Kaitlyn in quickly to see their pediatrician. Kaitlyn was sick, and her diapers were very heavy at the time. “She’s the hero. She’s the one who made sure Kaitlyn did what she needed to. She immersed herself into learning everything she could about the disease, which is what you have to do.”

Karlya, too, has done his fair share of advocacy on Kaitlyn’s behalf. Since her diagnosis, he has devoted his life to finding a cure for type 1 diabetes (T1D). He switched careers, moving from a successful acting profession to working for Breakthrough T1D (formerly JDRF). From there, he discovered the Diabetes Research Institute Foundation in Miami, Florida.

“I’ve always been a positive person, and I decided that you can’t stop what comes into your life, but what you do with it – is the challenge.”

Flash forward to 2009, four days after his father died, Karlya’s son, Rob, was also diagnosed with T1D at the age of 13. “As an adolescent, Rob had his own unique problems, but he had a strong ally in his older sister, Kaitlyn.”

With two T1D children, Karlya has committed his time, effort and energy to spreading awareness about type 1 diabetes. Particularly, Karlya has pooled his resources and knowledge toward missed diabetes diagnoses. “The misdiagnosis of type 1 diabetes is a really big thing of mine.”

Actor Turned Advocate

Before his life-altering career move, Karlya starred in the New York City production of Tony’ N Tina’s Wedding. For 15 years, he acted with the original Broadway company.

Karlya also appeared in several television shows, Unsolved Mysteries, Spin City, The Cosby Show, NYPD Blue, Law and Order, America’s Most Wanted, Entertainment Tonight, Access Hollywood, and several television commercials. Moreover, his film, Lbs., was featured at the Sundance Film Festival.

Consequently, Karlya still pays his SAG-AFTRA and Actor’s Equity dues, hoping to return to acting after a cure for T1D is found.

Diabetes Research Institute Foundation (DRIF)

 Karlya decided to devote his life’s work to finding a cure after asking himself, “If not me, then who? If I don’t do this for my own child, then who will?”

From 1999 to 2005, Karlya worked with the DRI Foundation, serving as Northeast development director and national director of special projects. Founded in 1971, DRI is a recognized world leader in cure-focused research.

Located at the University of Miami Miller School of Medicine, DRI has pioneered many techniques used in islet transplantation and is now bridging cell-based therapies with emerging technologies to restore insulin production.

Karlya is enthusiastic about cell therapies. “The manufacturing of cells that will work is the most exciting thing for me. Being able to transplant an unlimited supply of cells that can work without immunosuppressant drugs was a pipedream years ago. Now, hundreds of centers and programs are talking to each other.”

dLife: Your Diabetes Life

Karlya took a brief sabbatical from DRIF to work for dLife: Your Diabetes Life on CNBC, the first television show to showcase diabetes-related topics. For five years, he was the executive producer of the show that earned him 15 Telly Awards (formerly the Cable Ace), the Media Health (FREDDIE) Award and an Emmy Award nomination for the best public service commercial, “Test Don’t Guess.”

There, Karlya created the dLife Healthcare Foundation, an organization that offers online courses on low-carb nutrition and metabolic health. The foundation also has a dLife YouTube channel with videos on low-carb and ketogenic diets.

Return to Research

Despite dLife’s initial success, Karlya returned to DRIF in 2008 in a National Position as SVP. “I remembered my original promise to Kaitlyn, to give my support and best effort to finding a cure.” Karlya believes DRI has a great chance of being one of the many places where more and more are honing their focus on finding a cure for type 1. “The DRI remains the most focused on ending diabetes during my children’s lifetime.”

In Karlya’s current role as DRIF’s senior vice president, he directs national sponsorship initiatives and fundraising programs. He serves as the liaison with North America’s Building Trades Unions (NABTU), the largest donor to the DRIF, giving over 77 million dollars. “Makes me even prouder of my acting Union cards,” Karlya adds. With all his life experiences, Karlya is still hopeful for a practical cure for type 1 diabetes.

“As long as organizations are funding the research, as long as scientists are working together, and as long as companies are doing everything they can to make their products bigger, better, and smaller, then it’s a win.”

DiabetesDad.org

If his work with the Diabetes Research Foundation and dLife: Your Diabetes Life wasn’t enough, Karlya is best known for his monthly column, “DiabetesDad.org,” in which he shares insight, advice, and heartfelt observations with the diabetes online community (DOC).

For decades, Karlya’s monthly blog, based on his personal experiences, has thrived and been translated into other languages. A man from India told Karlya that he translates his article every month.

“My journey is no different from anyone else’s. It’s not better or worse; we’re all given life. I think it’s important to realize life doesn’t give anyone a bye. If you let diabetes rule your life, it most assuredly will.”

Just Don’t Do Nothing

Karlya’s mantra of “Just Don’t’ Do Nothing” must have inspired daughter Kaitlyn to choose a career in medicine as she graduates next month with a Doctor of Nurse Practice (DNP) degree.

Award-winning blogger Karlya lectures at global events, including the ADA, Breakthrough T1D (formerly JDRF) Summit, Insulet, Walgreens, National Association of School Nurses, the Association of Diabetes Care and Education Specialists (ADCES) and the United Nations.

Karlya has testified on Capitol Hill and received numerous commendations and a Presidential nod for his work in the Katrina efforts, collecting insulin for over 10,000 people with diabetes.

For this reason, Children With Diabetes (CWD) awarded him the Jeff Hitchcock Distinguished Service Award. He also received the Diabetes Advocate of the Year Award from the Metro-NY Chapter of the American Association of Diabetes Educators (AADE).

Get Diabetes Right

Karlya created the organization “Get Diabetes Right” with d-mom Kim May to spread awareness for T1D misdiagnosis throughout communities. On the website www.GetDiabetesRight.org, people can download flyers and posters to help educate the public about diabetes.

“When a child’s T1 diagnosis is missed, a child can, and has, gone into diabetic ketoacidosis (DKA) and gets very sick and, in some cases, has died.”

Karlya and May receive no endorsements or payments for the site, and May volunteers her ad agency to assist with upkeep.

“It’s still too often that people are diagnosed with type 1 diabetes at death.”

A Caregiver’s Perspective

In addition to his award-winning blog, Karlya has been featured or quoted in countless publications such as Newsday, USA Today, Diabetes Health, The Los Angeles Times and most notably the American Diabetes Association’s Clinical Diabetes Journal.

In May 2019, Karlya contributed to writing a research study on “Misdiagnosis and Diabetic Ketoacidosis at Diagnosis of Type 1 Diabetes: Patient and Caregiver Perspectives.”

“We wrote this incredible paper, proving that the misdiagnosis of type 1 diabetes was real.” The article was featured in the ADA’s practical guide for diabetes care.

Reegan’s Rule

Another remarkable triumph Karlya helped achieve was the Reegan’s Rule law, passed in North Carolina in 2015. The law requires medical professionals to supply parents with diabetes education at each yearly check-up up to the age of five years.

Reegan’s Rule honors Reegan Karice Oxendine, a 16-month-old child from Pembroke, North Carolina, who died at 16 months old from complications of undiagnosed T1D.

Type 1 diabetes has similar virus-like symptoms often mistaken for the stomach flu.

Karlya, Reegan’s mother and several others started a grassroots fight to shift the paradigm for pediatric diabetes testing. The law encourages early screening for diabetes, and over 10 states are considering similar legislation. “Little Reegan’s mother was a force to be reckoned with…what an honor to have met her and played a small role in those efforts,” Karlya said. 

More than Just a Dad

All accolades aside, Karlya insists that he’s just a dad. Whether he’s musing on his fatherhood blog, testifying before Congress or producing award-winning television, Karlya is making a difference in the lives of children and adults everywhere battling T1D.

Today, Karlya resides in Surfside Beach, South Carolina, with his wife, Jill. They have three grown children (Tom “TJ,” Kaitlyn and Rob)

His advice to parents of newly diagnosed T1Ds is to stay away from the internet for the first two months. “Listen to your doctors. Then, the more you know about this disease, the more you’re going to own it. By doing this, we receive the best management tools to stay healthy. I tell parents, you are limited only by your imaginations.”

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