When University of Massachusetts junior Christina Roth started a student group for others living with type 1 diabetes in 2009, she had no idea that her organization would quickly become the number one resource for young adults like her and would expand to college campuses all over the United States in eight short years. But that is exactly what has happened!
With eight full-time staff members, seasonal interns, boards and committees, as well as over 120 student leaders on campuses across the country, College Diabetes Network (CDN) is a 501(c)(3) non-profit organization that provides peer-based programs to connect and empower students and young professionals to thrive with diabetes.
As Insulet is a supporter of CDN*, we wanted to introduce CDN on Podder Talk™, just in time for the start of the new school year! We sat down with Christina Roth to learn more about CDN and the services it provides from its Boston headquarters and campuses nationwide.
How did CDN get started?
CDN got started in 2009 at UMass Amherst, when I had the idea to start a student group for young adults living with type 1 diabetes (T1D) on campus. I created a website over winter break that year, and it quickly became the number one resource on Google for “College” and “Diabetes.” Students from across the country contacted me to learn how they could start similar groups on their campuses. It was apparent that there was a huge gap in resources for young adults with diabetes, and I applied for 501©3 status in 2010.
After graduating from college in 2011, I worked as a research assistant at the Joslin Diabetes Center, and CDN became my “5pm-10pm volunteer job.” In 2012, my fellow volunteer, Jo, and I both quit our jobs and gave ourselves six months to get CDN off the ground. We succeeded, and CDN has grown in size and scope each year since!
Who is your main constituency/audience?
While CDN’s primary focus is supporting young adults with type 1 diabetes (T1D), we also recognize the importance of supporting those around these young adults, too. CDN has programs and resources for T1D young adults as they transition into independence from high school, into college, and beyond. We also work with those who support these young adults, including parents and caregivers, clinicians, campus administration, roommates, and friends.
What are the different programs and services you offer to the T1D community? Describe some of the unique challenges that young adults face and how your organization fills those gaps.
Being a young adult with T1D isn’t easy. Transitioning into college and adjusting to young adult life while also managing diabetes can be a challenge for many. CDN’s programs help provide the support, information, and resources young adults need by leveraging the power of peer support.
CDN offers a wide range of programs to support the needs of young adults with T1D, as well as those that support them. CDN’s centerpiece program is our Chapter Network, which currently includes over 110 affiliated student-led groups on college campuses across the country. Our Chapters provide local, in person support for young adults with and affected by diabetes. In addition to our Chapter Network, we also aim to help young adults have better access to opportunities to become the next generation of leaders in the diabetes sector, including professional conference attendance, internship matching, and our annual student leadership retreat.
CDN’s Off to College program helps to support young adults with T1D in their transition from home to college, and reaching independence in their management of diabetes. CDN has free “Off to College” booklets for both students and their parents, as well as resources for clinical providers to help them navigate the transition into independence with their young adult patients.
CDN recognizes the transition from college life to “the real world” can be just as challenging as the transition into college, so we are in the process of launching our new “Off to Work” program to help young professionals with diabetes transition successfully into the workforce. Other new programs coming out this year include our Newly Diagnosed Young Adult program, which addresses the unique needs of newly diagnosed young adults between the ages of 17-25, as well as our Campus Toolkit program, which is currently being piloted at 25 campuses for the 2017-18 school year to help campuses better support the needs of students with diabetes. Finally, keep an eye out for the CDN “Mental Health and Body Image Facebook Live Event,” which will be hosted this fall and discuss the issues many young adults with diabetes face surrounding depression, anxiety, eating disorders, and more.
What are CDN’s top three priorities?
- Expanding our network – We are close to having a CDN Chapter in every state! We would like to have a Chapter accessible to all T1D college students in the United States, be that a Chapter on their campus or one within driving distance.
- Off to College Program – The transition from home to college can be challenging for students with diabetes, as well as their families. CDN has compiled booklets with information for students and parents to help make that transition a little easier. Check out a preview of the Student Booklet and the Parent Booklet. If you want to request your own copies, click here!
- Newly Diagnosed Materials for Young Adults – This fall, CDN will be launching resources for people diagnosed with T1D between the ages of 17 and 25. This growing segment has unique considerations related to managing T1D, from social pressures to first jobs and everything in-between. Keep an eye on CDN’s Facebook page for information about these new resources.
What makes CDN unique?
CDN has fundamentally changed how the T1D community thinks about and supports young adults with diabetes. The organization is the gold standard in supporting this underserved population, and is widely recognized as the leaders in this space with a track record for successfully addressing gaps and creating change.
What makes CDN successful?
CDN makes sure to include students’ opinions and feedback on all new projects – from inception to implementation, CDN ensures that all programs are relevant and useful for the population we serve! Also, our staff are passionate about empowering young adults living with T1D. Most of them have T1D and know first-hand the trials and tribulations that come along with college life and managing a chronic illness. They are dedicated to making that process a little easier for the next generation.
How can people with diabetes or connected to the diabetes community connect with your organization or learn more?
If you are a student interested in starting or getting involved in a Chapter on your campus, contact us at firstname.lastname@example.org
*Insulet Corporation is silver-level corporate member of CDN, which helps CDN to continue to expand their programs without adding fees for resources or participation.
In a series of 12 episodes, Podder™ Talk is featuring interviews between professional snowboarder Sean Busby and inspirational people in the diabetes community. In this episode of Sean Busby’s Heroes, Sean talks with nine-year-old Taite and his five-year-old brother Trevor about their lives with type 1 diabetes. Taite and Trevor are busy little guys, playing baseball, snowboarding with Riding on Insulin, and being advocates for the type 1 community.
ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.
Advocacy is the big buzzword in the medical world today. You might be urged to advocate with Congress about insurance coverage, diabetes research funding and workplace issues. You are told to advocate for yourself with your doctors, your diabetes educator and your teachers and coworkers.
It can all seem a bit overwhelming. Where do you start? What’s most important to you?
I got my first taste of advocacy in the 1970’s when, as a teenager, I went to lobby on Capitol Hill with JDF (before it was renamed JDRF). We visited congressmen to ask for funding for diabetes research and tell our stories. I also “published” the JDF Nassau/Suffolk county newsletter (this is WAY before personal computers and publishing software – the old fashioned way of typing an article on a typewriter and then cutting and pasting it onto pages!) … just to spread the word about events and news in the diabetes world.
So where do you start?
Nowadays, I’ve gotten involved with the diabetes online community (DOC), which is a very vocal group of T1D’s who write, blog, podcast, write letters and lobby in and for the diabetes community. Some of the more active and effective sites include:
- DPAC: (diabetespac.org) – The Diabetes Patient Advocacy Coalition, co-founded and run by Bennet Dunlap and T1D Christel Marchand Aprigliano, as an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. DPAC “seeks to ensure the safety and quality of medications, devices, and services; and access to care for all Americans with diabetes.” It’s a powerful group and certainly worth a poke around their website.
- diaTribe: (http://diatribe.org/) – a patient-focused online publication, part of The diaTribe Foundations, whose mission is to improve the lives of people with diabetes. “diaTribe seeks to empower our readers with useful, actionable information that gives them hope for a better future, and helps them live happier and healthier lives. Our tag line is ‘Making Sense of Diabetes (http://diatribe.org/about-diatribe).’” Regarding advocacy, they offer a column called “Moving the Needle”, which covers advocacy happenings around the world.
- Diabetes Hands Foundation (diabeteshandsfoundation.org ) – a non-profit organization which offers Diabetes Advocates (diabetesadvocates.org), whose mission is to connect people touched by diabetes for positive changes, so that nobody living with diabetes ever feels alone. They offer a weekly advocacy newsletter, collaboration in advocacy initiatives (such as Spare a Rose, Save a Child – SpareARose.org), scholarships to attend diabetes conferences, micro-grants to support diabetes advocacy projects, inspiring advocate stories and much more.
- DiabetesMine (www.healthline.com/diabetesmine) is, as they say, a “gold mine of straight talk and encouragement.” In the advocacy world, Amy Tenderich and Mike Hoskins report on FDA talks with the diabetes community, the cost of insulin, access to insulin worldwide and much, much more.
AND THEN … there is advocacy that has NOTHING to do with diabetes. You could choose to be involved in causes that touch your heart or your family or your pets or the environment. Dig around the web for groups that advocate in the area of your passion … or start your own crusade.
I had the opportunity, as a scholarship winner to the DHF MasterLab Advocacy 2016, to hear Scott Johnson and host of Diabetes Social Media Advocacy Live DSMA open the meeting with a talk about embracing
your inner advocate.” He says we all have a “fire inside us … and that life with diabetes is a huge puzzle with missing
pieces. By exploring and challenging our ‘puzzle view’, we can truly make a difference.”So, as he says, “When you feel something click into place, or you notice a tug of curiosity, or a surge of frustration… pay attention! That is your fire talking to you, and it’s hungry. Just take it all in, then follow your fire and feed your fire.” Maybe it’s just a path for you to become aware. Maybe it’s a call to action to share with others. Just maybe it’s a call to take some action. Be sure to listen to it and follow it, wherever it takes you.Let us know where it leads you!
ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.
Advocacy is the big buzzword in the medical world today. You are urged to advocate with Congress about insurance coverage, diabetes research funding and workplace issues. You are told to advocate for yourself with your doctors, your diabetes educator and your teachers and coworkers.
Sounds like just one more task to add to the pile of things you must do to live with diabetes. No, thank you, I already have enough to do, between testing and bolusing and counting carbs and exercising and changing Pods and changing sensors. Phewwwww … enough already! Right?!
Well, no, not really. It’s really not all that hard … and it’s really important. After all, who’s more important to your own life than you? It is survival.
Let’s break it down into what you can do and what will make your life better.
MOST IMPORTANT: Advocate for yourself! How, you may ask?
When you go to see any of your healthcare professionals, be prepared:
- Before your appointment
- Write down any questions or health problems you need to discuss
- List what you expect to come away with, after the appointment
- Bring a list of your medications and a pad of paper/pen (or notepad on your smartphone)
- Check if you need updated prescriptions for medications or Pods
- Make sure you know how to reach your provider if you have further questions
That’s it … simple! You are prepared and organized, which helps you get your needs met and helps your healthcare professional understand your needs as well.
You can also advocate for yourself within your family and friends.
- First, think about your life with diabetes and what you might want from your family members, friends, co-workers, by way of emotional support and actual actions and under what circumstances.
- Do you want them to listen to you when you are frustrated or scared?
- Do you want them to just say, “Awwww, yeah, that’s tough. I feel you.”?
- Or do you want them to help you solve some struggle you are having?
- Then, and this is a big next step, you need to educate them on what you need from them.
- If you just want a sensitive and caring ear, tell them that sometimes you might just need to vent. Then ask them if they would listen and show compassion without having to actually do or fix anything.
- If you want them to be alert for certain problems (low blood sugars, high blood sugars or simply unusual behavior or unattended alerts), you will need to educate them.
- If you might need their help in placing a new Pod, you will also need to show them and train them.
How to educate your advocates:
- First ask if they’d be willing to help you from time to time.
- If they say yes, teach them what they need to understand about your needs and what actions you need them to take.
- Role-play with them so that they feel comfortable with what you are asking them to do.
- Give them the tools to make them successful:
- Fast sugar/glucose tabs
- Glucagon (and teach them how to use it and practice)
- A list of phone numbers for them to call
- How to stop, fill and start a new Pod
- Check in again with them about how comfortable they feel about helping you. Ask them if they have any questions.
- Review and practice from time to time. You do this all the time, each and every day. But it continues to be new to them, until they need to step in for you.
Just a short story about my early life with diabetes. I was diagnosed at age 11, in the 5th grade. There were no blood glucose meters, only urine testing (pretty useless for low blood sugars). When I would experience a low blood sugar, I was coached to tell my teacher, who then told my best friend, Tina, to walk me to the nurse’s office, where I was given orange juice.
I thought that worked pretty well and also allowed Tina to get out of the classroom for a short bit. Many years later, Tina shared with me that she used to be terrified. She didn’t understand what was going to happen and how sick I was … and worried that it was all her responsibility. That’s a large burden on an 11 year old without proper education and appreciation. Yes, I’ve thanked her and apologized for causing her concern. All that could have been made easier with a better explanation and giving her freedom of choice to help.
Coming soon: Part Two: Advocacy and the Bigger Picture