DRC & Research News

Everyone has experienced the wonders of childhood. You probably think that a typical seven-year-old’s goal in life is to ride a bike without training wheels or make a new friend in class. Mine was to learn how to give myself my own shots. Weird, right? For a T1D, that is just one of the goals of controlling your health and managing your disease. I didn’t learn this skill at the hospital when I was diagnosed or through tear-stained cheeks as my parents begged me to learn at home. Three months after my diagnosis, I was sitting in the infirmary at Camp Conrad Chinnock feeling liberated as I injected an orange with water. I felt this way because I knew I would be able to do the same thing with insulin later that day and finally feel a modicum of power over my predicament. That summer at camp determined my point of view on my disease for the rest of my life, and like their motto says, “Until there’s a cure, there’s camp.” 

Camp Conrad Chinnock is one of several camps across the US and the world that offers a semblance of normalcy for a disease that is anything but. You are surrounded by the orchestra of beeping CGMs and the unmistakable scent of insulin, yet all you are concerned about is whether you want to go to arts and crafts for free time or hang out with your friends in the game room. Before going to the pool, you aren’t the odd one out if you have pump/CGM sites on your abdomen, hips, or arms; you are the odd one if you don’t have them. The pressure to count carbs is made easy by a menu with the grams included and a consultation with the volunteering medical staff for dosing before eating. Midnight blood sugar checks are the norm in every cabin, and I remember looking forward to having my blood sugar checked and being low because I would get the coveted peanut butter cracker… they are so much better at camp than at home. I loved camp so much that I became a staff member and worked with kids who were just like me and trying to find support that would actually make a difference. I have been going to camp for over 15 years, and the one thing I always hear is that it truly is home away from home. 

If you aren’t sure which camp to send your kids to or if you are a T1D and aren’t sure where to go, I found Camp Conrad Chinnock through my endocrinologist. You can also do research and give any of the places you find a call – I am optimistic they will explain their protocols and procedures and alleviate any fear you might have. Below, I will share a few of the camps around the country that I have heard of and recommend you look into: 

– Obviously, Camp Conrad Chinnock. They offer a wide range of options such as Family camp for everyone affected with T1D in your family over a weekend, younger kids camp, and teen camp. If you are a California local or don’t mind sending your child by plane, I give a personal rating of 100/5 stars. 

– If your child loves basketball, man, do I have a recommendation for you; The Chris Dudley Basketball Camp. This is a week-long overnight camp in Oregon for youth with T1D, ages 10-17. Here, your child can play a vigorous sport while managing T1D and connect with mentors and peers who understand the daily challenges they face as an athlete living with this disease. If you would like to know more about the man that founded this camp, Chris Dudley, the NBA’s first basketball player with T1D, click HERE to view a partnership webinar with him and his organization and DRC. 

– Do you live on the other side of the country? Camp Kudzo is an independent, nonprofit organization that serves children and teens living with type 1 diabetes. Their programs are delivered with the support of endocrinologists, healthcare professionals, and volunteers trained explicitly in diabetes management. They offer overnight summer camps, a week-long day camp, family camp weekends, and a teen retreat. 

– Can’t afford camp and live in Idaho? Camp Hodia provides educational camps and programs for youth with type 1 diabetes regardless of their ability to pay. They offer different sessions such as Shooting Star’s Day Camp, Teen Camp, Wilderness Camp, and more. 

– Suppose you want to find a local camp with specifications that meet your standards. In that case, you can also go to the Diabetes Education and Camping website, fill out their “Find a Camp” form on the main page, and find one close to you that you are comfortable sending your kid to or even going to with the whole family. 

Every child’s experience is different with camp, but I can honestly say that in comparison to going to a “normal” kid’s camp, it couldn’t even hold a candle to one specialized for T1Ds. Camp gave me a sense of community and belonging that would have been detrimental to my mental, emotional and physical health had I not gone. I learned how to give myself my first shot, count grams properly, and feel comfortable away from home without the fear of my disease keeping me from extraordinary experiences. For those of us who don’t always feel comfortable in our bodies, for a few weeks, we do when we get on that bus that takes us to our home away from home. 

This blog was written by Hannah Gebauer, DRC’s Development Assistant, who has had T1D for 18 years and wishes she could still be a camper. 

My family loves to travel. Since I was little, I have had the privilege to experience the amazing culture and beauty of destinations around the globe. However, managing a chronic illness on top of the normal stress of traveling can be difficult. In Cazzy Magennis’ “Ultimate Guide to Traveling with Diabetes,” she provides some very helpful tips and tricks, many of which I use every time I travel. 

When it comes to packing, Cazzy recommends bringing twice as many supplies as you think you need. I recommend also dividing your supplies between bags if you can. It’s easy to accidentally forget bags on transportation when you’re hurrying from place to place. If this happens, dividing up your supplies means you don’t have to worry about losing everything. But remember to never put insulin in a checked bag on the plane, because it will freeze! Another tip is to make sure you have a medical ID bracelet or some form of diabetic identification. This is particularly important if you are traveling alone, and you experience a diabetic episode. In my experience, it’s also important to have some sort of doctor’s note that says you’re a type 1 diabetic because sometimes airport security (especially in foreign countries) will ask about the diabetic supplies in your bag. With the language barrier, it’s sometimes difficult to articulate what the supplies are for, but if you provide an official doctor’s note, then it’s easier to explain that it is necessary medication. Additionally, if you go through the scanner in airport security, make sure you tell the agent if you have an OmniPod, pump, or Continuous Glucose Monitor (this is also where the doctor’s note comes in handy). Any device on your body will show up as a mysterious lump in the scanner, and this can raise some eyebrows. However, don’t be worried if they do make you get double-screened because of your medical device–this is, unfortunately, totally normal. Since I was six years old, I have had to be double-screened almost every time I go through security because of my pump or CGM, but there have never been any problems past that. Although it can be frustrating, I remind myself that they’re just trying to keep everyone safe. 

 Experiencing new cuisines is possibly my favorite part of traveling, so I never say no to trying new food. But new foods mean unknown carbohydrate counts. Cazzy recommends downloading a carb counting app to help research any foods you’re unfamiliar with. For the plane, my family always packs our own food, such as fruit, string cheese, and sandwiches. This makes it way easier for me to know how many carbohydrates I’m eating. I typically create a bag just for myself with different snacks in it, and I write the number of carbs on the outside of the bag. Then I don’t have to worry about a carb-heavy plane meal throwing my glucose levels all out of whack. 

Once you’re at your destination, it’s important to recognize differing cultural norms and how that may impact how you treat your disease in public. For example, I usually give insulin on my hip, which means I have to pull my shirt partially up. In certain areas, this isn’t considered appropriate to do in public. To respect this, I will give insulin in a private space. When I was little, I used to check my blood sugar levels on my toes. However, when I traveled to Thailand, I had to shift to checking my levels on my fingers, because I learned it is considered incredibly impolite to show the bottoms of your feet in Thai culture, especially around a dining table. Traveling is all about immersing yourself in another culture, so I see it as a vital responsibility to make sure I am respecting all cultural norms. 

Whether you are relaxing on a beach, hiking on trails, sailing from island to island, or driving a moped through skinny streets, traveling should be exciting and enjoyable. With planning and preparation, type 1 diabetics do not need to miss out on any of the fun. 

This blog was written by Lauren Grove, DRC Intern, who has had T1D for 15 years and is writing in response to the article, ““The Ultimate Guide to Traveling with Diabetes.”

Discussing Diabetes with DRC’s T1Ds is a new campaign where those with type one diabetes (T1D) in the DRC community share their thoughts and personal anecdotes in response to lifestyle articles related to T1D care and management.

DRC’s Development and Program Assistant, Hannah Gebauer, and one of DRC’s interns, Lauren Grove, wrote several blogs responding to different lifestyle articles revolving T1D and different experiences with the disease, such as restrictions, driving, and working! Look below to find an article you may be interested in and its URL link:

Click HERE to view a blog about driving with T1D.

Click HERE to view a blog about T1D in the workplace.

Click HERE to view a blog about working out with T1D.

Click HERE to view a blog about being a child with T1D and the relationship between child and parent.

Click HERE to view a blog about handling high blood sugar with T1D.

Click HERE to view a blog about stress management with T1D.

Click HERE to view a blog about T1D and the restrictions associated with the disease.

*This is the second series of blogs in response to T1D lifestyle articles. There will be more in the future. Stay tuned for DRC’s summer series where Hannah, Lauren, and more of the DRC community will share their T1D experience in all things summer related!

This past year has been defined by resilience. Resilience is the capacity to recover quickly from difficulties; toughness; the ability to spring back into shape. Many of us have faced adversity this past year in ways that we could never have imagined. We had to re-learn how to parent, work, and engage in the community, and we had to reassess what is most important in our lives. As we begin to move out of a global pandemic, it is our community and our resilience that will take us to the future; together. At DRC, our community of those impacted by type 1 diabetes (T1D) every day are resilient; our staff and volunteers are resilient; our supporters and donors are resilient; our research community is resilient. And as a result, we have seen more focus and dedication to DRC’s vision to support scientific inquiry until diabetes is eliminated than ever before. We depend on our collective resilience to finish this year strong!

Click HERE to view the newsletter.

During the COVID-19 pandemic, I have heard many people say that they feel like their freedom was taken from them with unjust cause. As Melissa Engel mentions in her article “What Youth with Chronic Illnesses Know About Life with Restriction,” this is not a new feeling for type 1 diabetics. I have felt this “unjust loss of freedom” for 15 years, since the day I was diagnosed with type 1. Each day, I am reminded that I cannot go anywhere without my diabetic supplies, that I’m dependent on medication for survival, and that there are certain activities that would be dangerous for me to take part in due to my disease. Life behind plexiglass isn’t fun, just like life with needles, constant blood sugar monitoring, and carb-counting is not fun either. 

Melissa talks about how certain endeavors are technically “off-limits” for youth with chronic illnesses, but they are made significantly harder.  For example, when I am at a birthday party, I know I can enjoy a slice of cake. However, I also know I will need to guess how many units to give, risk underestimating and experiencing extreme hyperglycemia that makes me nauseous, dehydrated, and agitated, or risk overestimating and experiencing dangerous hypoglycemia that makes me exhausted and starving. Sometimes, it’s easier to not eat the cake. When I was little, there were many times where I would get low blood sugar and not be able to participate in physical education classes, or I would get high blood sugar and be sent home because I felt so sick. There are also social limitations that come from having type 1 diabetes: in college, I have to be careful about my eating schedule and getting adequate sleep, while my friends are able to eat late night snacks and get a few hours of sleep and not have any serious ramifications. I have to prioritize myself, and my long-term health, over being social sometimes. 

Dealing with these restrictions is difficult. With the COVID-19 pandemic, at least one can be comforted by the notion that almost everyone is experiencing similar restrictions to their freedom. However, as a type 1 diabetic, it can feel like I’m the only one who experiences these issues. Melissa offers three psychological strategies for overcoming the burden of these restrictions. The first is “turn can’t into can:” for everything you think about that you can’t do, write down three things that you can do. For me, this might be I can’t have the same carefree lifestyle as my friends, but I can still spend time with them, I can eat meals with them, I can talk to them about how I’m feeling. Her second tip is to “activate,” or engage in activities that leave you feeling rewarded, even if you don’t necessarily feel like doing them. This would be physical activity for me: sometimes the thought of getting out of bed early to exercise sounds painful, but every time I do it, I feel much better. Melissa’s third and final tip is to “practice dialectical thinking.” Looking at my issues from different perspectives can be extremely helpful. Life with type 1 diabetes is unfair, and there is no way around that. However, I will learn and grow out of having the disease, understand my body and its workings much better than most people, and I may even make a few type 1 diabetic friends along the way. 

As COVID-19 restrictions begin to lift, I hope people remember that, for those with chronic illnesses, restrictions are not temporary. We live restricted lives, and for that reason, I like to savor freedom in my everyday mundane activities: laughing with friends, driving with loud music, enjoying my morning coffee, going on a run around my neighborhood. Because of my disease, these moments of freedom become even sweeter. 

This blog was written by Lauren Grove, DRC Intern, who has had T1D for 15 years and is responding to the article, “What Youth with Chronic Illnesses Know About Life with Restrictions.”

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Hello Diabetes Research Connection (DRC) Community,

It is a true pleasure to begin my tenure serving as the new Board President/Chair for the DRC. Like my predecessor David Winkler, I remain committed to growing and expanding the DRC so that we can fund as much innovative science as possible. Together, our collective passion and drive will inspire hope while setting a realistic, tempered approach to identify and support the best science in the Type 1 Diabetes (T1D) community. While we continue to learn and grow the organization, we welcome two additional leaders to our team.  First is Karen Hooper, our new Executive Director, who joined the team in March. She brings 20 years of non-profit leadership experience with her, building innovative programs and lifetime relationships.  Karen is dedicated to the DRC mission and excited to help us expand and reach more scientists and partners across the country.  Next is Vincenzo Cirulli, MD, Ph.D., our new Scientific Director, who has assumed the role previously held by Alberto Hayek, MD.  Vincenzo has spent his career in islet biology and brings  both exceptional expertise and vision as the new leader of scientific funding.  As you can see, the DRC family is growing and thriving. I invite you to please join me and help DRC fund more meritorious research than ever before.  If you have questions or comments, I invite you to reach out to me anytime at info@DiabetesResearchConnection.org.

On June 7th, 2021, the Salk Institute published the work of two Diabetes Research Connection (DRC) fully-funded researchers, Hiasong Liu, Ph.D., and Ronghui Li, Ph.D., and DRC’s newly approved to be funded researcher Hsin-Kai Liao, Ph.D., and their most recent and exciting findings. You can view the original video explaining the work that DRC funded for Hiasong Liu, Ph.D., by clickingHERE. If you would like to see the completed work of Ronghui Li, Ph.D., clickHERE. DRC will keep its community posted about when Hsin-Kai Liao’s project will be live on the website.

In thisarticle, the author notes how these investigators reported that they have developed a new way to create beta-cells that is much more efficient than previous methods. Through the testing of these new beta-cells, results showed that when these beta cells were tested in a mouse model of type 1 diabetes (T1D), the animals’ blood sugar was brought under control within a two-week time frame. This research was initially funded by DRC. The preliminary data made it possible to obtain funding from the Larry L. Hillblom Foundation and a DRC Partner, the Moxie Foundation,to finish their work. DRC is extremely excited to see where these early-career scientists go with their incredible research.

Please DONATE NOWso DRC can keep funding novel research designed to prevent and cure T1D, minimize its complications and improve the quality of life for those living with the disease.