Hi there. I’m Tom Karlya. I have been active in diabetes causes since my daughter, Kaitlyn, was diagnosed with type one diabetes (T1D) in 1992 at two. My son Rob was also diagnosed in March of 2009 at thirteen. My world is mostly about diabetes, but that is my choice.
I made that choice when Kaitlyn was diagnosed, and she looked up at me in the hospital after looking at all of the tubes and wires attached and said, but two words that changed my life, and those two words were: “Daddy, Fix!”
My Mantra of “Just Don’t Do Nothing” is well known in the diabetes community as it is up to us to change the parameters for our kids, for ourselves. If we don’t, who will?
I made her a promise that I have kept to this day that we would not stop until we found a cure for her and millions more like her. We would also do everything we could to keep ourselves educated so she would know the best management tools to keep her healthy—and all of that was added when her brother was also diagnosed.
Our oldest son does not have diabetes, and we are grateful for that, and his name is Tom—well, Thomas James, actually—but we’ve called him TJ since the day he was born. We are proud of all of our kids. Our kids are as unique as they are special and talented—each in their own way. I have a great family and am always impressed by my kids and their desire to help so many.
For years at CWD conferences and elsewhere, I have been introduced as Diabetes Dad–there are surely many more than just me. I do not own the phrase, but it seems to have just stuck on me over the years, and I will accept that title until I can change it—when diabetes is no more and has been cured. What a day that will be. I am also extremely active in preventing the Missed Diagnosis of T1D
I started this blog to help educate and inspire all parents or those who live with diabetes. You will see an entire gamut of emotions and stories on this blog, and they will not all be about diabetes. I’ve been blessed with an incredibly fortunate life, and diabetes nor anything else will stop us from living as positively as we can. By choosing to ‘just not do nothing” we have been on one incredible journey, and it is my hope that you might learn some things along with us as we move forward in life.
I’m not a medical professional, and I want to be clear about that from the get-go. My stories are just that—mine. My opinions are just that—mine. I do not always write ‘to be safe.’ I write what I feel. Always taking ‘the safe’ route can be pretty boring sometimes, so I believe in ‘putting it out there’ for the main reason to make people think. I am probably as wrong as often as I am right, BUT—I welcome everyone to be involved. I hope to open dialogue because no one has made more mistakes with this’ diabetes thing’ than me—I am, and will always, be learning also.
I’m presently the Vice President of the Diabetes Research Institute Foundation the Foundation to the Diabetes Research Institute at the University of Miami in Florida because I believe they are the leaders in actual cure-focused research for my kids—there is no one better out there with a more collaborative effort than the DRI—and I’m always looking to see if any one place is better. So far I’ve not found one, so my ‘day job’ is with the DRI. Considering where we came from, I count myself honored and blessed that ‘my job’ is also my passion. Diabetes is a 24/7 aspect for me…and I cherish that opportunity—it has been quite a journey.
I have worked for dLife and the JDRF and volunteered for the AADE & ADA and many other diabetes organizations. I’m presently from SC and originally from Long Island, and I spend a GREAT deal of time in Florida and traveling trying to inspire others with our story and encouraging others to “Just Don’t Do Nothing .” I’m a Children with Diabetes (CWD) dad and credit them for keeping us as informed as we have been to this date.
I welcome ALL comments and feel free to contact me at diabetesdad926@gmail.com. We are all in this together, and it is only together that we can change the paradigm of diabetes from care to cure.
AWARDS & RECOGNITONS
(I am told that it makes sense to add awards to your page—so here are a few that I have been fortunate to receive)
- Listed #1 for Blogs for Parents and Family Members of Children with Diabetes on Diabetes.org – 2023
- Named #4 in 100 Best Diabetes Blogs by Feedspot – 2023
- Named #15 in 30 Best Type 1 Diabetes Blogs by Feedspot – 2023
- Named on top 100 Best Dad Blogs and Websites by Feedspot -2023
- Named #21 Top 100 Father Blogs by Feedspot-2018
- Named on Best Blogs/Diabetes by Healthline: 2015, 2016, 2017, 2018
- Top 100 Diabetes Blogs by Feedspot-2018
- Named #39 Top 100 Father Blogs by Feedspot-2017
- Named to Top 10 Best Bloggers/Diabetes by Medical News Today 2017
- Named to Hard Boiled Body’s Top 51 Diabetes Blogs for Lifestyle Tips-2017
- Jeff Hitchcock Distinguish Service Award from The Children with Diabetes in 2008
- Man of the Year by The LI Advertising Club
- Diabetes Advocate of the Year by the American Association of Diabetes Educators.
- LIONs Club Robert Uplinger Award for Distinguished Service
- NYC Transit Police Award for Film: Diversity
- Emmy Award Nomination, Best Public Service Commercial Spot dLife “Test Don’t Guess”
- Winner 15 Telly (former Cable Ace) Awards at dLife and as DiabetesDad
- Four nominations and The Best in Medical Media, The FREDDIE Award.
- Won FREDDIE Award for “Sexual Intimacy and Diabetes”
- Commendation, The White House for work in the Katrina efforts organizing relief efforts to over 10,000 people with diabetes.
- The George Estabrook Award/Alma Mater Award of Hofstra University for his work in diabetes and television.
(This is the self-serving portion of the show, but it might help to know how I got here.)
SPEAKING
As a diabetes advocate, I have had the privilege to have been introduced to the New York State Capitol, testified in Washington, D.C., appeared at diabetes-related events at the United Nations, and have served as a panelist or keynote speaker at numerous diabetes events internationally. My past speaking engagements have included leading diabetes organizations, national and state political hearings, national retailers, and over 100 schools. I have lectured internationally and chaired many panels about being a Diabetes Dad, which is my pen name used virtually everywhere.
My past speaking engagements include:
- National Association of School Nurses
- AFL-CIO North American Building Trades
- Insulet
- Walgreens
- Shoprite
- American Diabetes Association
- JDRF Summit
- NY State LIONs State Conference
- Children with Diabetes US
- International Diabetes Federation
- Diabetes Education and Camping Association
- Pediatric Endocrinology Nursing Society
- Association of Diabetes Care and Education Specialists
PUBLICATIONS & ACTING APPEARANCES
I created “Get Diabetes Right” with a d-Mom from Texas, Kim May. This site is for people to download flyers and posters to help educate the public about getting diabetes, right. Kim volunteers her ad agency on the upkeep and continuation of much that happens on the site (www.GetDiabetesRight.org).
I’m working on an inspirational video so newly diagnosed kids can be inspired, not just by celebrities but by others who are ‘just like them .’
I am also continuing my work on an extensive education program (A Child’s Cry for Change) to try to prevent the ‘missing the diagnosis’ of T1. One child is too many, and it certainly has happened too often. When a child’s T1 diagnosis is missed, a child can, and has, gone into DKA and gets very sick and, in some cases, has died. This is just unacceptable. A Child’s Cry for Change is trying to change this occurrence.
For five years, I was the Executive Producer of dLife, Your Diabetes Life on CNBC.
I have been most fortunate to have written and/or produced public service announcements for diabetes causes featuring celebrities such as Ray Romano, Sugar Ray Leonard, Doris Roberts, Nicole Johnson (Miss America 1999), Sandra Oh, Patti LaBelle, Peter Boyle, Brett Michaels, Jim Turner and others.
As an actor, for 12 years, I starred in the New York City Production of Tony’ N Tina’s Wedding, working with the original NY Company—and also appeared at The Kennedy Center for the Performing Arts, Washington, D.C., in Summer of the 17th Doll. I appeared in the film, lbs., at the prestigious Sundance Film Festival and have also appeared in Unsolved Mysteries, Spin City, The Cosby Show, NYPD Blue, Law and Order, America’s Most Wanted, Entertainment Tonight, Access Hollywood, and other shows as well as numerous commercials.
Acting is where my life was when Kaitlyn was diagnosed in 1992—I do hope to return after we find a cure (so much so that I still am a paid member of SAG-AFTRA and Actor’s Equity, my two performance unions).
PRESS
Over the years, I have been featured or quoted in numerous publications such as Newsday, USA Today, Diabetes Health, Parent Guide Weekly, and The Los Angeles Times, to name a few.
Advancements toward a diabetes cure with Dr. Camillo Ricordi and Dr. James Shapiro – Diabetes Research Institute Foundation, September 9, 2022
Funds from Chicago Elevator Constructors’ Annual Golf Outing help experts fight diabetes – Elevator Info, August 18, 2022
The Dave and Amber Show Ep 8 Interview with the Diabetes Dad – The Diabetes Way, February 16, 2022
More than a Medical Plan: Accommodations to Consider – Diabetes Research Institute Foundation, October 10, 2018
Spring Match Challenge: A Diabetes Dad’s Quest for a Cure – Diabetes Research Institute Foundation, June 20, 2018
Educators build awareness of missed type 1 diabetes diagnosis – Healio, August 4, 2017
Misdiagnosis of Type 1 Diabetes – Touched By Type 1, November 7, 2016
Diabetes: Missing the Diagnosis – dLife, January 2016
Diabetes and ED – dLife, June 2015
Diabetes Champions 2014 – dLife, 2014
5 Complications Tom Karlya – myDiabCare, November 13, 2013
Be Part of the Cure – Diabetes Research Institute Foundation, November 1, 2010