Diabetes Advocates Who Inspire Us!
These five ordinary people have more in common than an association with diabetes -- they also share a goal of raising awareness for the disease. Let the stories of these diabetes advocates inspire you in your own diabetes journey.
Making a Difference
These are the stories of five ordinary people. All of them begin with the same simple yet powerful desire: to make a difference in the fight against diabetes.
Teen with Type 1 & Big Dreams
When she was diagnosed with type 1 diabetes at age 12, Rachel Tobin had more to concentrate on than most middle-schoolers do: blood glucose tests, site changes, high and low blood sugars, the effects of exercise and food intake, and insulin dosing.
"It was a total life change," says Rachel, now 19. "And it was a very emotional time for me."
In 2006, she had a thought: "I realized that the only thing that's going to cure this disease is research, and research costs money," Rachel says.
Rachel had been spending weekends at her grandmother's house learning how to make jewelry -- and she was good at it.
"So I thought I'd make six or seven pieces, sell them to friends and family, and make about $200 to donate to JDRF," says Rachel.
The jewelry sold quickly. So Rachel made some more. She and her mom, Linda, began visiting retailers in their hometown of Pittsburgh. They found about a dozen willing to sell Rachel's wares, and she went to work making even more bracelets. Soon a national network of several dozen retailers was in place. Rachel still made and designed each piece herself.
In 2009, she registered the business as Rachel's Cure by Design, an LLC, and launched a website, rachelscbd.com. Her mother and a family friend, Margie Dubner, became official business partners and helped Rachel, then 16, by running the day-to-day operations.
Today, Rachel is a freshman at Emory University in Atlanta, where she's declared a major in biology and enrolled in a pre-med program. Her mom and Margie, along with a handful of volunteers, now handle the assembly and shipment of the beaded jewelry, including the new line of earrings, but Rachel still designs all the pieces and helps assemble them when she's home.
And that $200 Rachel hoped to raise for JDRF? It snowballed into $50,000 by mid-2012. Next stop, she says, is $100,000.
Tom Karlya, 54, didn't choose his Diabetes Dad supersuit; it chose him. In 1992, Tom's wife, Jill, took their second child, Kaitlyn, to the pediatrician because the 2-year-old was having flulike symptoms. The doctor ran blood tests and told Jill to take Kaitlyn to the emergency room -- immediately. Kaitlyn was in a dangerous hyperglycemic state. After getting a frantic call from Jill, Tom raced to the hospital. Medical staffers were bustling around Kaitlyn, who was lying in bed awash in tubes and tears. Tom pushed her hair out of her eyes and gently wiped them dry.
"Daddy?" she said.
"Yes, honey?" he asked. Kaitlyn said the only word her young vocabulary could find: "Fix."
"I promised her then and there that I would fix it, that I would not stop until there was a cure," Tom says. "Diabetes cannot win. I cannot let it win. We cannot let it win."
Jill and Tom learned to manage Kaitlyn's type 1 and taught her to do the same. And Tom threw himself into the world of diabetes advocacy, working with JDRF, the American Diabetes Association, and other groups. In 1996, Kaitlyn's little brother, Rob, was born. Thirteen years later, he, too, was diagnosed with type 1.
In a former life, Tom was an actor. He starred in Tony 'n' Tina's Wedding with the original cast. He acted in Summer of the 17th Doll at the Kennedy Center. One of his movies, Lbs., was screened at the Sundance Film Festival. And he was all over TV, appearing in Unsolved Mysteries, The Cosby Show, NYPD Blue, Law and Order, and many other shows.
After his promise to Kaitlyn, Tom took on a different role: diabetes advocate, volunteer, fund-raiser, and motivator to other parents of children with type 1. That commitment redoubled with Rob's diagnosis. Tom gives talks around the world on how parents can navigate type 1's many demands, the enormous benefits of summer camp (learn more at childrenwithdiabetes.com), and always about ending diabetes.
Tom has written and produced public service announcements for diabetes-related causes starring such notables as Ray Romano, Sugar Ray Leonard, and Brett Michaels. Tom is also the vice president of the Diabetes Research Institute Foundation, has a blog at diabetesdad.org, and a column for the website dlife.com (search "diabetes dad").
Blogger with Diabetes
Many people mourn the loss of normal when diagnosed with diabetes. For Kim Vlasnik, 33, diabetes was her normal. Diagnosed at age 6 with type 1, she was too young for the fear or depression that can be common among people diagnosed at an older age. And it helped enormously that she was raised with a strong support system in a family already familiar with type 1 (Kim's grandfather had it).
Growing up, she took part in multiple fund-raisers and events, a practice that continues. She volunteers with JDRF and the Diabetes Advocates program, and she serves on the advisory board of Diabetes Social Media Advocacy, a group promoting social media as a way to bring together people with diabetes. Kim meets people -- lots of people -- who don't feel normal, who feel ashamed and terrified by diabetes.
"Diabetes can be a very isolating experience," Kim says. "You often don't know anyone else with it, and you think there's something wrong with you."
Kim realized that most of these people don't have a support network, that essential element in making diabetes what she calls "a much more bearable team sport."
So in 2010, Kim started a frank and funny blog from her home in eastern Nebraska, giving it the name Texting My Pancreas. Its aim: to show others through her writing and cartooning that they are in good company as they face the tough stuff of diabetes. After hundreds of thousands of pageviews, Kim knew she needed a better venue for all the other voices willing to laugh at the thing that so often makes them cry.
The answer came in June 2011 with the launch of the You Can Do This Project (YCDT), a grass-roots video movement with a website (youcandothisproject.com) where anyone can post their own candid -- even brutally candid -- take on diabetes. And when they do, amazing things happen.
"It's so inspiring and motivating when people are so open and honest about the very thing they're most afraid of being open and honest about," Kim says. "They begin to draw strength from what they once perceived as weakness."
That strength is augmented by the rest of the YCDT community. "It's huge. The community supports them; other people tell them it's OK and share their own stories," says Kim. "I'm so amazed and humbled by how many people have embraced this and are also embracing each other."
Although it's a video movement, written blog posts and podcasts are welcome, too.
"Don't worry about it not being polished," Kim says. "The videos that are more off-the-cuff, shot with a cell phone, are often the ones that are the most impactful."
Check out Kim's blog at textingmypancreas.com.
A fall down a flight of stairs saved Rosa Rosen's life. It was 1997, and Rosa, now 61, was working for a legal firm after graduating from Hofstra University in Long Island, New York, with a law degree. She lost her footing on some steep stairs and sped headfirst into a door jamb, leaving her with injuries that took eight months of recovery. In the hospital, doctors discovered her type 2 diabetes. And it had been there awhile: Rosa could remember blurry vision, frequent urination, and constant thirst dating back five years.
During her recovery, Rosa grew mystified why she never knew the symptoms of diabetes, even though both her grandmothers and five of her aunts died from diabetes-related complications.
"I realized the reason I didn't learn anything from them is because they didn't have anything to teach me,” Rosa says. That wasn't their fault; knowledge about diabetes within the Latino community is spotty, often nonexistent, even though -- according to 2010 estimates from the U.S. Centers for Disease Control and Prevention -- 52.5 percent of U.S. Latinas are at risk to develop diabetes in their lifetimes, compared with 38.5 percent of U.S. women overall.
When Rosa returned to work, she also became a volunteer and a champion for culturally specific diabetes education. In 1998, she founded the Latino Education Project, a nonprofit organization dedicated to providing exactly that. Later that year, she started Diabetes & Nutrition -- now simply called Diabetes -- a newspaper distributed in North Manhattan that provides critical information on diabetes awareness, management, and nutrition in both English and Spanish. Its success, says Rosa, comes from the fact that its content is recognizable to Latinos.
"When I first started it, there were recipes already translated into Spanish, but they were useless," Rosa says. "We don't eat yogurt for breakfast." Rosa left the legal world for good in 2003 to become a full-time diabetes educator.
"When some of my relatives died, they were younger than I am," Rosa says. "I no longer have any signs of diabetes in my body. And neither do my two daughters, because they know about this and they don't have to suffer the same fate. No one's children should have to."
In 2002, Peter Nerothin, now 33, had just graduated from college and was newly diagnosed with type 1 diabetes. For his next step, Peter decided he wanted to revolutionize diabetes management by empowering individuals to better manage their condition through active living and peer support. After a few years spent mostly abroad experimenting with the effects of intense physical activity on his blood sugar levels, Peter returned to the United States with a working model called adaptive management.
"The more experience I had climbing mountains or surfing, and pushing the boundaries of what would be considered conventional diabetes management, the better I was at controlling my diabetes," he says.
By 2005, Peter had honed his technique enough to complete his first Ironman triathlon and start Insulindependence, an organization that supports people with diabetes who are aspiring athletes or adventurers or who want to explore their individual capacities as people.
"There was a real need for a community where you could exchange insulin strategies and anecdotal stories, and help each other become better at being active people with diabetes," he says. At insulindependence.org and at 21 local chapters in 17 regions, that community now exists. And it's active in every sense of the word: More than 5,000 donors -- individuals, corporations, and foundations -- keep the nonprofit organization going and growing.
Then there's its signature annual leadership training program -- the University of Insulindependence -- which teaches volunteers about the technique, then trains them to show others how it works and to lead adventures requiring those newfound levels of fitness, whether it be as simple as flinging a Frisbee around at dawn in a neighborhood park or as ambitious as hiking a mountain range in Peru.
"When I was diagnosed, the main message I received was that diabetes was going to control my life," Peter says. "But really we've learned that the more adventure in your life, the better off you'll be."