Town Hall Role Models Score Points for JDRF Children’s Congress

By Talley Henning Brown

Regular blood testing and insulin dosing can put a crimp in anyone’s stride, but type 1 diabetes is no deterrent to even the most energetic and ambitious lifestyle—just ask the Town Hall role models. At the JDRF 2011 Children’s Congress Town Hall, five adults with type 1, all successful individuals, told their stories of triumph to the 155 children who came from across the country and around the world to serve as delegates. The role-model panel—Olympic gold medalist Gary Hall Jr.; Amazing Race winner Natalie Strand, M.D.; JDRF researcher and New York City Marathon runner Aaron Kowalski, Ph.D.; NFL Super Bowl champion Kendall Simmons; and LPGA golfer Carling Coffing—joined the delegates for a candid talk about how they achieved their most ambitious goals while managing their disease. The talk and the following Q&A session were moderated by Brian Kenny, anchor of ESPN’s SportsCenter and host of numerous programs on TV and radio, whose daughter Cammy was a 2007 Children’s Congress delegate.

Olympic gold-medalist swimmer Gary Hall Jr., who was invited to his first Children’s Congress just after his diagnosis in 1999 at the age of 24, credits his ability to keep bringing home the gold to having the support and the example of others with type 1 diabetes to spur him on. When he was diagnosed, doctors told Mr. Hall, in no uncertain terms, that he would never again be an Olympic contender. He chose not to believe them. After gathering a team of diabetes professionals—physician, registered dietitian, and diabetes nurse educator—he fine-tuned his eating and blood testing schedule to accommodate a rigorously aerobic training regimen that would normally deplete blood glucose stores to dangerously low levels. This care-by-committee approach to managing type 1 diabetes has worked wonders for the swimmer. Seven-year-old Meredith Whitt, a delegate from Alabama, asked Mr. Hall exactly how many Olympic medals he’d won. “Four before my diagnosis,” he answered, “and six after.” The applause was thunderous.

Amazing Race winner Dr. Natalie Strand was asked by Cassidy O’Neill, a 10-year old delegate from Florida, why she chose to compete on the CBS reality television show in which two-person teams compete in an around-the-world competition with extreme challenges carrying only a backpack. “Mainly for myself,” Dr. Strand said, “but also to show all people with type 1 diabetes that living a full life is possible.” Diagnosed at age 12, the young doctor-to-be used to believe that one day she’d achieve perfect, worry-free control over her blood sugar. “That’s still possible in the future, with the research going on,” Dr. Strand said. “But now I think, if I make every day a little better than the one before…that’s the secret of always heading in the right direction.” And the secret to her success on Amazing Race? Eleven-year-old Ethan Fox of North Carolina wanted to know what she packed in that essentials-only backpack. “My test strips, my insulin, and my snacks,” she said.

“We don’t have to have any limits,” said JDRF’s own Aaron Kowalski, Ph.D., who has lived with type 1 diabetes since age 13. Dr. Kowalski is an internationally recognized diabetes researcher, and a two-time New York City Marathon runner. Currently JDRF’s Assistant Vice President of Treatment Therapies, Dr. Kowalski is the leader of JDRF’s Artificial Pancreas Project, a multimillion-dollar initiative that began in 2005 to accelerate the progress toward a closed-loop insulin-delivery system. Jonathan Beals, a 13-year-old delegate from Massachusetts, asked Dr. Kowalski what it’s like to study a disease that he himself has. “The thing that has given me the most hope…is the amazing commitment from the research community,” Dr. Kowalski said. “Some of the smartest people I know are working on trying to find a cure for us.”

And his research—as he answered Nathan Denton, a 17-year-old delegate from Ohio who aspires to be a pediatric endocrinologist—continues to yield surprising results. One area of research focuses on “Medalists,” those individuals who have been living with type 1 diabetes for 50 years and whose bodies continue to sustain functioning beta cells (the cells in the pancreas that produce insulin). “Studying these people with type 1 diabetes gives me a lot of hope for finding an actual cure,” Dr. Kowalski said.

Kendall Simmons, an offensive lineman who played for the Pittsburgh Steelers, New England Patriots, and Buffalo Bills, is not what you would call a small guy. Being a football player, he told the delegates, “we all have a tendency to overeat.” Mr. Simmons was diagnosed the summer before the 2003 football season—a devastating blow to come before his first season as a professional. When six-year-old Sam Dickinson from New York asked him how his disease affects his game, the answer came easily to Mr. Simmons. “I had support from the guys on the team,” he said. One teammate and friend in particular, who is familiar with the disease, can always tell when Mr. Simmons is experiencing high or low blood glucose. Normally a playful person, Mr. Simmons told the delegates that his personality starts to change whenever his number dips or spikes, and that he relies on his friend to remind him to stop and take care of himself. And he took that support all the way to Super Bowl XL in 2005, when he and his Steelers teammates defeated the Seattle Seahawks at Ford Field in Detroit.

Professional golfer Carling Coffing, on her fourth season on the Duramed Futures Tour, is no stranger to the care-by-committee approach to managing type 1 diabetes. Diagnosed at the age of five, Ms. Coffing’s family was the “committee” that was central to her diabetes care. “We were all very involved, and it became something that brought the family together,” she said. Growing up, her friends were a great help as well. “When I was low, we were all low.” Now in the high-pressure world of professional golf, she has a unique perspective on managing her disease. “Golf is a game of inches, so there’s not very much room for error,” and type 1 diabetes is exactly the same. Though while on the course she still tests her blood sugar every two or three holes, the experience of living with type 1 has actually made her more confident in her daily life, and in 2010, she was the winner of Golf Channel’s hit reality series, Big Break. “When you have type 1 diabetes, you grow up fast. We have to remember 10 times a day to test our blood sugar and eat the right foods…and constantly monitor ourselves. And if we can do that,” she said, “we can conquer the world, I think.”

People with type 1 diabetes never get a time-out, but as this year’s role-model panelists have proven many times over, managing the disease does not have to mean the end of any ambition—even an Olympic gold medal, an around-the-world competition, a scientific discovery, a Super Bowl championship, or a hole-in-one on the golf course. And though the day has not yet come when “perfect” blood glucose control is possible, a big-enough dream can be excellent motivation for learning how to keep the disease at bay. Like every one of the Children’s Congress delegates, the 2011 Town Hall panelists have rolled with more than their share of punches, but, as they assured the delegates, in the end that just makes them stronger competitors.