You Are JDRFYou Walk. You Ride. You innovate. You partner. You inspire. Read the real stories of people, like you, who are changing the lives of millions touched by T1D.
Angela HarlowDiagnosed at age 10
“I am JDRF because I love to participate in JDRF One Walk® every year! My team—especially the kids—look forward to it. We also try to make it to all of the different functions JDRF holds in our area. Everyone at JDRF does so much to help and support every family they come in contact with and this is so important.”
For 27-year-old Angela Harlow, living with type 1 diabetes (T1D) during pregnancy has been her biggest challenge yet. However, when she was diagnosed, she was told that she would never be able to have children of her own. But thanks to research advances and better therapies, she is now expecting child number three.
Angela didn’t have a continuous glucose monitor (CGM) during her first two pregnancies and had to test her blood sugar 10 to 15 times per day. She also set her alarm several times in the middle of the night to check her blood-glucose levels. Now seven months into her third pregnancy, Angela has started experiencing more insulin resistance. Even with her continuous glucose monitor, she checks her blood sugar more often.
She has a very supportive healthcare team that offers lots of encouragement. “Before becoming pregnant, I communicated a lot with my endocrinologist and set a goal to get—and keep—my A1C [hemoglobin HbA1c] around 6.5 percent prior to conception,” she says. Also, feeling the kicks and flutters helps her stay positive and not worry so much about the sleepless nights and stressful days with T1D.
The Schuh familyTravis diagnosed at age 8, sister Jadah at high risk
“Starting with raising the money and walking with JDRF to now being a participant in TrialNet studies, you are seeing where that money that you raised goes to.”
The Schuh family first learned about T1D in 2009, when Travis, then 8 years old, was diagnosed. His mother Susie says, “It’s a life-changing event for the whole family. We had no idea. When he was admitted into the hospital his blood-sugar levels were so high he had DKA [diabetic ketoacidosis], which is extremely dangerous.”
In February, the Schuh family joined their first JDRF One Walk to help raise funds to T1D research. A few summers later, Travis’s 8-year-old sister Jadah had her blood drawn for a screening test to detect her risk of developing T1D.
The test showed Jadah was at high risk, and she is now participating in a prevention study through TrialNet. “As long as I’m participating in this study I really don’t care if I get placebo or the real drug, I just really want to make a difference,” she says.
“Jadah’s participation in this research and her feeling of being part of the cure are important,” Susie explains. “This has been an incredible experience. And the best part is making a difference.”
Maddy ArnsteinDiagnosed at 22 months
“JDRF really is so tremendously positive and effective”
Maddy Arnstein has lived with type 1 diabetes (T1D) for over fifty years. She became involved with JDRF when she saw the dramatic difference technologies like the insulin pump could have on her life. Maddy was quickly drawn to advocacy—initially to help secure continued renewal of funding for the Special Diabetes Program (SDP). However, once she started using a continuous glucose monitor she dedicated herself to fighting for Medicare coverage.
In 2017, Maddy took part in JDRF Government Day, where she had an empowering experience meeting with her Members of Congress. She offered a unique perspective because she’s seen first-hand how far research has come over the years. She says, “Because I’m very action-oriented, I can’t tolerate just sitting around and discussing something with no results…through JDRF I can actually help make things better for the next generation.”
Phyllis KaplanDiagnosed at age 2
“JDRF has impacted my life in so many ways: by providing my family resources and support when I was first diagnosed; by funding research that has led to better diabetes management tools that I use today; and by continuing to provide support through education, awareness, and advocacy to the entire type 1 community.”
Diagnosed in 1974, Phyllis Kaplan and her family have been involved with JDRF since the early days of the organization. She has witnessed many technology advances in that time, including the first FDA-approved hybrid closed-loop system. Launched in spring 2017, this is the first approved system that constantly self-adjusts to automatically keep your sugar levels in range, based on how you live your life.
“For me it was a no-brainer. I had been excited when the MiniMed 530G with Enlite sensor came out with the ‘suspend on low’ feature, and that system worked really well for me. When I heard that the 670G did that and a whole lot more, I didn’t hesitate to add my name to the waiting list!”
Phyllis says the pump is intuitive and that the trainings were extremely helpful. It took a few months and a few tweaks to adjust to the system, but it was worth the effort. The greatest benefits Phyllis has experienced so far are fewer low blood glucose episodes, better management during exercise, and more time with blood glucose levels “in range.”
Rachel SheadDiagnosed at age 9
“JDRF introduced me to other people my age with type 1 diabetes (T1D), and opened the door to the fact that we are a community, and you don’t have to fight alone.”
When Rachel Shead was young, she couldn’t find a book that told her T1D “wasn’t the end of the world.” So, she decided to create a book of her own. An aspiring artist, Rachel wrote and illustrated a children’s book about diabetes. The book tells the story of an ordinary girl who is diagnosed with T1D and realizes that her strength and bravery have transformed her into a superhero, Type 1der Woman!
“I’ve always wanted to create my own book, and diabetes was the inspiration I was looking for.”
Rachel has been involved in JDRF since she was diagnosed, and says the organization has made a big impact on her life. “Each year, I built a larger team of family and friends that came out to support me. The annual JDRF One Walk brought the people I love together in one place, as it did for many other families.”
Rachel hopes to uplift and inspire others with her book.
Carol AtkinsonDirector, Insulin for Life USA
Going without insulin can be a death sentence for someone with type 1 diabetes (T1D). Yet so many people around the world struggle to acquire life-saving diabetes supplies. Carol Atkinson has dedicated her career to helping medically underserved communities. In 2012, together with her husband, noted T1D researcher Mark Atkinson, Ph.D., she helped establish Insulin for Life USA (IFL USA), a nonprofit organization that delivers insulin, test strips, meters, glucagon kits and more to people in need.
While the vast majority of IFL USA’s work is in developing countries, it plays an important role in disaster relief at home. After hurricanes Harvey, Irma, Maria and others battered areas in the U.S. Gulf Coast and the Caribbean, IFL USA joined forces with JDRF, the American Diabetes Association and other organizations to provide emergency diabetes supplies to affected regions. There was an outpouring of support, with people giving both money and unused, unexpired insulin, test strips and other necessities. In fact, many JDRF chapters organized collection points for donated items.
“I have an all-new, increased appreciation for the strength of the diabetes community. People helping people—that encourages me, and empowers us and motivates us in ways that are hard to describe,” Carol says.
The most impressive part of the IFL USA model, according to Carol, is its sustainability. There are many reasons why someone in the U.S. may no longer need perfectly usable insulin, she explains. By directing this surplus to local healthcare providers, and connecting providers to at-risk people with diabetes, IFL USA facilitates more consistent care, which, in turn, leads to better health outcomes.
Lance BergsteinDiagnosed at age 5
“JDRF is pushing forward with research and innovation, and I put that research and innovation to use on a daily basis.”
Lance Bergstein credits advancements in type 1 diabetes (T1D) technology for enabling him to participate in high-level race car driving, and hopes he can inspire others. He grew up as a nationally ranked tennis player, playing nearly every day of the week, for multiple hours a day. “A lot of it was experimentation, figuring out meals that I could predict how they would impact my blood sugar so I could be at my peak performance when I was playing a match.”
When Lance stopped playing tennis, he discovered a natural talent for racing cars, and in April 2017, he competed in his first 24-hour race. To prepare, he went to the gym three times a day, and worked closely with his endocrinologist. Together, they devised a way to mount a Dexcom CGM in his race car, which allowed him to constantly monitor his blood glucose.
The race was “super-emotional because it was unfathomable five or ten years ago. I think it’s important that if someone has a passion, they shouldn’t let T1D interfere with doing the things that they want to do.”
Heather MaurerDiagnosed at age 1
“I participate in the local JDRF walk every year. My husband and I asked for JDRF donations as wedding gifts when we got married.”
Heather Maurer says the hardest thing about being a mom with type 1 diabetes (T1D) is stopping in the middle of playing with her two-and-a-half-year-old son to test her blood glucose. Luke doesn’t want his mom to stop playing with him, and thinks the beeping noises from her pump are “scary.” Lori and her husband are trying to teach him that the pump is being helpful when it beeps, but it’s a hard concept for a toddler to grasp.
Heather worries about developing complications and not being able to fully participate in Luke’s life. “I also struggle with disease fatigue, which can make me feel just exhausted, and sometimes I just have to lay down, while my son wants to play. I work during the day, so when I don’t feel well in the evening, I feel robbed of quality time with my son.” Heather also worries about her son developing T1D, and has had him screened annually through TrialNet. She plans to continue screening him until he is 18 years old.
Nina Funa, Ph.D.T1D Researcher
“JDRF is a platform bringing T1D research and patients together.”
Nina Funa, Ph.D., a cell biologist and T1D researcher, recently received a JDRF Advanced Postdoctoral Fellowship. She is studying the signals involved in the growth of insulin-producing cells in order to improve potential cell therapies for T1D.
“Despite the current view of T1D being a manageable disease under insulin treatment, self-monitoring of glucose levels and adequate supply of insulin still cannot provide full control,” she points out. Cell therapies have the potential to provide better blood-sugar control with less effort.
Dr. Funa’s work could influence how cells for these therapies are generated, making the process faster, easier and more consistent. This in turn could make cell therapies and all their benefits available to many more people with T1D.
She is proud of her work, and thankful for JDRF funding, because “it feeds the pipeline for therapies that can benefit people with T1D in the future. With the ongoing efforts in improving protocols, I feel very optimistic about the future of cellular therapies for T1D,” says Dr. Funa.
Jennifer Sherr, M.D., Ph.D.T1D Researcher, diagnosed at age 9
“JDRF is multifaceted. It’s not just about raising funds and advancing science, it’s about supporting families. It’s about advocacy. And it’s about this amazing network of individuals, who are brought together for a joint cause they are passionate about.”
Jennifer Sherr, M.D., Ph.D., was diagnosed with T1D in 1987 and immediately decided to become a pediatric endocrinologist. Now a clinical research scientist, she provides medical care to kids with T1D and also does cutting-edge research to develop new therapeutic approaches for T1D.
Although she is very interested in diabetes technologies and reducing burden of the disease with therapies like hybrid closed-loop systems, she says, “I want a cure. The hybrid closed-loop is going to keep me in more targeted control so that when a cure becomes available, I’m able to receive it.”
She is also excited about work being done on new glucagon formulations to help with severe hypoglycemic events and about prevention efforts. “I’ve got kids, and what if one of them is going to develop it? What can we do to intervene?”
Dr. Sherr thinks that all the research being done is important. “I’m excited and I’m grateful for all the various scientists and research participants, who allow us to learn and hopefully, like JDRF says, make type one into type none.”
JL GarrettDiagnosed at age 4
“JDRF gives me hope that a cure will be found, which is why I choose to fundraise and advocate. I know there are many people aware of type 1 diabetes (T1D) because of my son.”
Courtney Thomsen doesn’t like fireworks, or even the mention of fireworks, in fact, they make her sick to her stomach. Her four-year-old son JL was diagnosed with T1D on the Fourth of July, and any kind of fireworks take her back to that day.
The family is adjusting to the diagnosis, but one of the most difficult challenges has been getting JL used to the shots and finger sticks. They have also reevaluated how they think about food. “Candy and slushies were always a reward for good deeds and behavior. I had to develop a prize system where he received little toys instead, and it took him quite a while to get used to it. We as a family had to learn to cook more, and eat healthier.”
Courtney says, “We take one day at a time. We have defeats, but we have victories. We celebrate in JL’s strength, and are there to catch him in his weakness.”
Sarah ScottDiagnosed at age 19
“JDRF means being involved in something bigger than just me. I’ve walked, run, and talked JDRF because it stands for what’s important—our lives, trials and triumphs, and a focus on the possibilities to come.”
A diabetes diagnosis is never easy, but it can be particularly difficult for college students, many who are living away from home for the first time. Sarah Scott was diagnosed with type 1 diabetes (T1D) during her sophomore year of college and says,
“In a season of life when college students are worried about their upcoming test or whether to talk to that cute boy in the cafeteria, I was trying to navigate my new world of finger pokes, insulin injections, and carb counting. I felt older than my peers, and some days I didn’t know how to relate to my friends anymore.”
Over time, Sarah gained confidence in managing diabetes and today, works as a child life specialist in a hospital.
“I may not understand exactly what they’re going through, but I do know what it’s like to be told your body isn’t working the way it’s supposed to. My job as a child life specialist is to help kids and teens cope, to help them feel safe, or to help equip them with the tools they need to navigate a new ‘normal’. T1D has shown me just how much of a difference that can make.”
Alex ReidyDiagnosed at age 20
“I became involved with Team JDRF because I wanted to be able to combine my love of fitness and my passion for supporting JDRF’s mission.”
Alex Reidy ran her first marathon, November 5, 2017, in New York City with Team JDRF–a group of 85 runners, who share the same goal to raise money for type 1 diabetes (T1D). So far this year, Team JDRF has raised $409,388 for the 2017 TCS New York City Marathon.
This was Alex’s first marathon, and while the training was tough, she says, “Running has turned into an outlet from the stress and struggle of living with T1D.”
Alex says that although the marathon was one of the most challenging things she has ever done, “it was also the most rewarding experience to be able to run on behalf of all of those affected by type 1 diabetes with JDRF.”
Angie JarzynaFormer school nurse
“I am JDRF because [type 1 diabetes] T1D still exists. I will continue to be JDRF until the kids that I ride for, and everyone I know, don’t have to do this on a day-to-day basis anymore.”
Angie Jarznyna thought she was going to quit at mile 80. Her feet hurt and she didn’t think she could make it to the end. She started to cry, and then, with the help of a coach, she got back on her bike and rode all the way to the end. Angie finished 500th out of 500 in the JDRF Ride to Cure Diabetes, but she didn’t care. She’d met her goal, and because she hadn’t given up, she was awarded the JDRF Spirit jersey.
Working for years as a school nurse and caring for many kids with T1D taught Angie about the daily struggles of living with T1D. She felt their frustration when they were having a tough day, and took on their struggles as her own.
Even though the 100-mile ride was harder than she imagined, Angie plans to ride again next year. “My whole outlook was that every T1D kid I’ve had at the school (as a school nurse) told me they didn’t want to have it … they wanted to quit and they can’t, because they don’t have a choice. If they can’t quit, I won’t quit.”
Joslyn ComrieDiagnosed at age 5. Mother Angi diagnosed at age 7
“We are the people that JDRF is about, we are the ones awaiting the state-of-the-art research and treatments, we are the ones taking what we learn from JDRF and educating others.”
Angi and Joslyn Comrie are a “team” when it comes to diabetes management. When Joselyn was first diagnosed, she found it difficult to explain type 1 diabetes (T1D) to her six-year-old classmates, and felt overwhelmed and “different” from everyone else. Second grade is much better thanks to her mother’s efforts to make sure everyone at school understands T1D. Angi stays in communication with the school nurse to make sure everything is going okay, and takes measures to make sure Joslyn gets to participate in events like classroom birthday parties.
“Joslyn is on an insulin pump, so we may insert each other’s infusion sets or CGMs [continuous glucose monitors], we may race to see who can do their blood test the fastest, or who has the best blood sugar. When it comes to carb counting, we both look at the food, keep our thoughts in our mind, then see how close we can be in number between the two of us. I think it’s EXTREMELY important that Joslyn is just as involved in her care as I am as her parent. We are in this together and that’s what makes us a team!”
Marci TathamDiagnosed at age 21
“Thanks to JDRF, I am confident to offer advice, knowledge and opportunities to educate others who are either walking through the first stages of their onset, or struggling to manage their day-to-day life with T1D.”
Marci Tatham is one of four people in her family with type 1 diabetes (T1D). Her father and two of her siblings were diagnosed in their twenties. The Tathams like to joke that they could run their own clinic with all their combined supplies.
“All jokes aside, we have grown closer through our journey, and constantly educate one another as we are all walking through the same disease, just at different phases. Each one of us manages our T1D differently, and have discovered what works (and what doesn’t work) for our body,” says Marci.
Marci grew up observing her father lead an active lifestyle, which helped to reassure her that diabetes would not limit her choices. When her two siblings were diagnosed, she was ready to help them adjust to their new life with diabetes.
Today Marci lives in California with her husband and will be starting a doctorate program this fall at Pepperdine University. She is a Global Ambassador for Beyond Type 1, and will be running her first marathon in New York City with Beyond Type 1 (Beyond Type RUN) this November.
Will StevensDiagnosed at age 14
“I can’t imagine how different this journey would have been without JDRF.”
Will Stevens was told he had growing pains when he complained of aches and pains. His family doctor advised his mother, Cassie, to give him a baked potato before each basketball practice and to make sure he had plenty of Gatorade to drink. Will’s health went from bad to worse. He lost a lot of weight, was tired all the time and told his mother, “Sometimes at school when I’m walking up the stairs I want to just sit down.”
By the time they went to the hospital, Cassie said, “he was displaying every symptom of DKA.” Will was diagnosed with type 1 diabetes (T1D), and they spent four days at the hospital learning a “new normal” and trying not to feel overwhelmed.
A misdiagnosis is not uncommon for people presenting symptoms of T1D. All too often, a well-meaning healthcare provider will mistake a child’s symptoms of “fatigue” or “leg cramps” for growing pains or the common cold.
Five weeks after Will’s diagnosis, the Stevens participated in a JDRF Type 1 Summit. Becoming a part of the JDRF community has been a “game changer.” Since then, Stevens have participated in three JDRF One Walks, and Cassie is part of the volunteer outreach.
Callie ComptonDiagnosed at age 2
“I’ve gained lifelong friends, and a support system through JDRF.”
Callie Compton, professional aerial and circus artist, has been involved with JDRF since childhood. “My parents had me volunteering doing simple tasks like putting stamps on envelopes when I was three years old. At 16, I attended JDRF’s Children’s Congress in D.C. to advocate for the Special Diabetes Project, which taught me invaluable public speaking and professional skills.”
As Miss Memphis 2017, Callie wears her insulin pump when she is speaking in public to change the way people view type 1 diabetes (T1D). She uses this platform to talk about overcoming challenges and to show that T1D does not stop you from achieving your dreams.
As a performer, Callie leads a very active lifestyle. Using aerial silks, she climbs, swings and drops from fabrics that hang from the ceiling. It’s a graceful form of exercise that requires balance, flexibility, strength, skill and frequent blood-glucose monitoring.
An active lifestyle is an important part of living well with type 1 diabetes. As Callie says, strict or careful monitoring of blood-sugar levels before, during and after exercise will result in a better workout.
Ariana ShakibniaDiagnosed at age 17
“JDRF is not just a great hub, connecting people living with T1D—it’s also a strong force for change.”
Ariana decided to study public health at the University of California, Berkeley in large part because she lives with type 1 diabetes (T1D). She had always been interested in public policy, but says that living with this disease has made her more vested in the healthcare conversation. “I am living with what is essentially a pre-existing condition. I’m fortunate enough to have good health insurance, but it makes the potential financial burden of T1D management much more visible and relatable.”
The JDRF community has been a great support and resource for Ariana, and she really appreciates connecting with people across the country she wouldn’t normally expect to meet. Now, with her degree in public health from Berkeley, Ariana lives in Washington, D.C., and is particularly motivated by the work JDRF is doing in advocacy. She finds it incredible how JDRF has mobilized a relatively small group of people to do big things—like securing bipartisan support for the Special Diabetes Program, which provides $150 million annually to T1D research.
Tyler NewboldDiagnosed at age 12
“I am JDRF because I own the fact that I have T1D, and am grateful about some of the things I’ve learned and the people I’ve met throughout my experience.”
Tyler Newbold played college basketball at Utah State from 2007-2011, and had the opportunity to play in three NCAA tournaments. His coaches and trainers always had Gatorade or candy on hand in case his blood glucose dropped during a game. Tyler tested his blood glucose right before training, and during halftime breaks. He says working out and playing basketball has helped him to be in better control of his T1D.
“There were times where I would be in the locker room trying to eat a candy bar real quick right before a game as I was too low, but I never wanted to let it be an excuse for me not to do the things I wanted to do.”
Tyler got involved with JDRF One Walk when he was in college, and as a basketball player, he was asked to be the celebrity speaker. “It was an awesome and humbling experience to help younger children understand that they can still achieve their dreams.”
Claire MattisonDiagnosed at age 10
“I am JDRF because I believe that a cure for type 1 diabetes (T1D) will happen someday soon. I believe that lancing devices, insulin syringes, test strips and ketone sticks will be a thing of the past. I believe that by raising awareness, support and knowledge, T1D will be a totally manageable disease that will not cause harm or complications.”
Claire is in her final year of pharmacy school and uses an insulin pump and a continuous glucose monitor (CGM) to help her “live a normal life.” She says both devices have helped her reach a long-term goal of lowering her A1C and allow her to exercise with the use of temporary basal rates.
Claire says, “Just because I have T1D doesn’t mean I can’t live a normal life. I played a varsity sports in high school, went to college and am now about to become a pharmacist. Yes, I do have to take extra precautions when doing certain things, but it doesn’t stop me. You can do anything you set your mind to!”