How do you measure the impact of an event? How do you quantify something that is difficult to explain to someone who has not experienced it? Studies about diabetes camps have shown how much peer support benefits children with diabetes. One study showed that many adolescents with diabetes learn about safety related to high-risk behaviors and type 1 diabetes at diabetes camps or Friends for Life (FFL) conferences. But these are just tiny glimpses into the vast expanse of what Friends for Life is.
What is Friends for Life?
As mentioned above, it isn’t easy to fully describe FFL. Children with Diabetes (CWD) hosts the largest event for people with type 1 diabetes in the world–think medical convention meets family summer camp, which all happens in a Disney hotel.
Here’s a very condensed run down on the schedule for the week –
- Tuesday – Registration opens for Attendees and Exhibitors, an evening faculty and volunteer appreciation event
- Wednesday – Youth Program*(more below) begins, Focus Groups and Other Sessions with the Exhibit Hall Grand Opening in the evening
- Thursday – Breakfast Buffet, Opening Keynote, Adult and Youth Sessions, Lunch, Sessions, Banquet and Dancing
- Friday – Sessions all day with Breakfast and Lunch, dinner on your own, an Adults with Diabetes event, Dessert with the Faculty Poster Session, and Family movie night
- Saturday – Family event in the morning led by one of the sponsors, then daytime relaxing by the pool and watching all the people with diabetes devices have fun, followed by an evening Family Fun Night
- Sunday – Farewell breakfast
The Youth Program
CWD brings a group of 180+ volunteers, 100 of whom are involved in Youth Programming. Anyone under 18 registered for the conference is put into the age group corresponding to their age on the first day of the conference:
- Kiddie Kove: ages 0-5
- Elementary: ages 6-8
- Tweens: ages 9-12
- Teens: ages 13-17
There are multiple reasons for putting the youth into separate programming from adults. First, they benefit from meeting others with diabetes around their own age. Second, the parents benefit from attending sessions without their kids. This allows them to be able to listen and focus on their own needs versus also caring for their child (or children) at the same time.
Children who attend FFL have sessions that cover various topics presented in a developmentally and age-appropriate manner. Some sessions are very diabetes-focused, while others are more general and applicable to all children with or without diabetes. There are times when the children with orange wristbands (those who do not live with diabetes) are separated from those with green wristbands (those living with diabetes) to allow them to have open and honest conversations about their perspectives, feelings, and experiences with diabetes. More and more of the orange band children at the conferences are not siblings but children of adults with T1D, but there are many siblings as well. (Learn about the story behind the green and orange wristbands here.)
Adult Program
Friends for Life’s adult program has been undergoing a shift from holding sessions only for parents of children with diabetes to holding sessions for adults living with T1D, grandparents of children with T1D, and significant others of adults living with type 1 diabetes. This shift reflects the changing demographic of FFL attendees. In 2024, for the first time since FFL began in 2000, more adults with T1D than children with T1D were in attendance. Session topics vary from the latest research to open discussions, and we have rotated topics across multiple years.
The Exhibit Hall
As a nurse, I have attended various medical conferences and have seen many exhibit halls. The only one that has been entertaining and fun is the Friends for Life exhibit hall. There are booths with virtual reality games, car racing games, photo booths, snow cones, arts and crafts, and so much fun swag. You will want to leave room in your luggage for all the fun stuff you get in the exhibit hall! You also may have the opportunity to see devices or products hands-on and ask the companies questions directly.
Social Events
The biggest social event is the banquet on Thursday evening. But, there are also events throughout the conference from Wednesday to Saturday to ensure ample time to socialize with fellow fiffles (FFL attendees). This is a massive part of what FFL is designed to do – create lasting connections in the diabetes community. This way, you have someone to reach out to after you go home when you need support on hard diabetes days. There are also many shared meals where you can sit with fellow attendees or conference speakers who you want to ask questions.
Measuring the Impact
Back to the original question: How do we measure the impact of Friends for Life conferences on people living with diabetes and their families? It’s hard to say what would be an accurate measure, but this year, we will conduct two surveys with the help of one of our teen leaders, Alanna Landry, and one of our faculty members, Dr. Jan Kavookjian. Alanna is a diabetes educator based in Toronto who has volunteered at FFL for over ten years. She plans to measure the quality of life before and after attending FFL for first-timer teens and their parents. Dr. Kavookjian is a behavioral science researcher who will be assessing diabetes stigma at both diabetes camps and Friends for Life.
Until we get this data, here are some other ways we could assess impact:
- Repeat Attendees – There is a large cohort of folks who like to attend every Friends for Life summer conference. More than half, usually around 60% of the typical 1700-1900 attendees, have attended an FFL previously. This speaks to how much people feel they get out of attending time and time again.
- Tattoos—That’s right, tattoos. At least seven people who are long-time Friends for Life attendees have tattoos with the Children with Diabetes logo. How many companies can say that they have multiple people with their logo tattooed on them? I’m not sure, but I can say I am one of the people with the logo on my body.
- Weddings – So far, there have been three weddings of people who met at FFL conferences. There are three children who have come out of these marriages so far, and likely more to come.
The Fiffle Network
CWD started as one of the first online type 1 diabetes resources, a part of the Diabetes Online Community (DOC), by hosting chat rooms and running email lists in the pre-social media days. But Friends for Life, created before most common social media sites, has truly created a network of people across the U.S., Canada, and even other parts of the world. When someone is going to study abroad, connections are often made through CWD or FFL to help ensure if any diabetes needs pop up, someone is there to help. When someone moves across the country and working to meet people in the area, there may be a FFL connection to help ease the transition.
The ripple effects of creating a safe, understanding space for people living with type 1 diabetes and their loved ones are likely immeasurable. But hearing stories from people who attend whose lives are forever changed positively makes us want to ensure Friends for Life continues as long as type 1 diabetes exists. Until there’s a cure, there’s CWD.
Written and clinically reviewed by Marissa Town, RN, BSN, CDCES
