Behind the Scenes of CWD & FFL

February 28, 2024

Despite being a small team, Children with Diabetes (CWD) is a non-profit organization that is able to accomplish many things! For two decades, it was run by only two people, Jeff Hitchcock and Laura Billetdeaux. They worked tirelessly and took few vacations for twenty years to grow CWD into the trusted, global resource that it is today. CWD now consists of six employees, the most it has ever had, and the small but mighty team does a lot to help the mission: Care today, Cure tomorrow.

Friends for Life Conferences

Most people know CWD for our major events for people living with diabetes, Friends for Life (FFL) conferences, primarily our annual summer conference in Orlando. What many people do not know is how much goes into creating the world’s largest gathering of people living with T1D. Putting on an event that hosts up to 2,000 people, including many children and adults who live with diabetes, is no a small feat. Planning for food that accommodates allergies, including a no-nut policy and gluten free buffets, then carb counting that food to make it easier for everyone to bolus, are only the tip of the iceberg for FFL planning. It takes not only the CWD staff, but a large team of volunteers who travel from across the country, and even some from outside the U.S., to ensure attendees have the best FFL experience possible. We also hold two smaller regional conferences, usually in the spring and fall, in other parts of the country.

Conference Programming

One of the main goals for the programs at Friends for Life conferences is to provide people with diabetes and their loved ones with education that they may not be able to get elsewhere. There is only a small amount of time per year spent with our healthcare providers, and it’s nearly impossible to address all aspects of diabetes during that time. Some people don’t have access to an endocrinology practice and instead see local pediatricians or primary care providers. Many adult providers do not have access to diabetes educators, social workers, or psychologists. We hope to fill in the gaps to help people thrive with diabetes as well as providing safe spaces for people to connect and support one another.

Choosing Speakers

It’s very important to us at CWD that the people who come to speak give FFL attendees respect and create a safe space for discussion. There are many motivated healthcare professionals who work in diabetes, but having empathy for people living with the condition is an absolute requirement if they’re coming to FFL. We hope to bring a wide variety of speakers who bring unique perspectives and information that will benefit FFL goers. We work with diabetes centers across the U.S. and even worldwide to ensure the latest research being done is presented to families and PWD. After all, these are the people who will benefit from the research.

Meeting New Speakers

One of the main goals of CWD staff attending other diabetes conferences is to network and meet new potential speakers. Our clinical director and president attend various sessions to hear people present, go to the scientific posters to see what is up-and-coming in diabetes research. We typically attend the American Diabetes Association (ADA) Scientific Sessions, the Association of Diabetes Care and Education Specialists (ADCES) annual conference, the Advanced Technologies & Treatments for Diabetes (ATTD) annual conference, and alternate between the European Association for the Study of Diabetes (EASD) and the International Society for Pediatric and Adolescent Diabetes (ISPAD) conferences. These events provide immense opportunities for CWD to collaborate with new healthcare professionals that helps us stay up to date on what the future of diabetes holds.

Collaborating with Other Diabetes Organizations            

There are many other diabetes organizations and groups who do amazing work for people with diabetes and their loved ones. CWD knows that we cannot provide all of the needs for people with diabetes, and we want to help other groups succeed as well. CWD works with ISPAD to bring one of the young researchers from their JENIOUS group to Friends for Life Orlando and helps spread the word about their research projects. We share studies that are actively recruiting on our website, in our newsletter, and often on our social media to help recruit participants. We also offer discounted prices for exhibiting at Friends for Life conferences for non-profits or smaller companies. We help with advocacy initiatives, go to FDA hearings, write letters of support, work on international research consortiums, and a lot of in between.

Working Closely with Industry Partners

CWD has developed an Industry Advisory Board over the past few years, and one of the goals is to ensure that CWD has insight into what is happening throughout the industry. We also seek out opportunities to meet with newer companies to support their work and our mission. For example, when Teplizumab was approved, CWD worked closely with Provention Bio, now housed under Sanofi, to help raise awareness about screening for T1D. This is something we are still working on and hope that it will help delay the onset of T1 for as many people as possible. CWD is proud of working with our industry partners, as we would not be able to host our conferences nor provide education to individuals with diabetes and their families without industry support. We also use these opportunities and relationships to provide direct access to industry to families and patients through focus groups and product theaters at Friends for Life Orlando. Friends for Life conferences change peoples’ lives, and we hope to continue doing so until we don’t have to because diabetes is cured.

Non FFL events

Recently, CWD has been planning and hosting events at the other diabetes conferences. These events vary from educational lunches with speakers such as Dr. George Grunberger to cocktail hours for the hard-working CDCES’s at ADCES. These events allow industry groups to provide information about their work to key leaders in the diabetes space and help CWD maintain relationships. At the upcoming ATTD conference, we are hosting a lunch for a newer company called Know Labs who are developing a non-invasive CGM. There will be a panel of leading experts in the diabetes field who will answer questions related to the device and its development. We will also host our third annual CWD President’s Award for Innovation at the ATTD conference.

Website Content

The website was the original concept of CWD – to help connect people living with diabetes and provide evidence-backed information about diabetes to all without cost. This was back when the only option for insulins was two injections a day and feeding the insulin. There is A LOT of information available on the internet these days, and, unfortunately, much of it is inaccurate. The team at CWD works diligently to ensure we are providing evidence-based science as well as real-life diabetes. We talk about things that people are doing such as taking medications that are only approved for type 2 diabetes because we want people to have the information needed to do so safely. We’ve talked about the DIY systems for years – way before anyone felt comfortable discussing them. We recently added an entire section dedicated to screening for type 1 diabetes and we’re constantly reviewing peer-reviewed journals to stay up to date on research.

Day to Day

So, how do we manage to do it all? We have online meetings, exchange emails, reach out to potential faculty, staff, sponsors, and supporters. We read scientific articles about type 1 diabetes, learn and use new software, respond to emails from people living with diabetes, and deal with the usual HR that all companies have. Meanwhile, half of our employees are dealing with the ups and downs of living with diabetes—ordering and organizing their supplies, dealing with highs and lows, going to medical appointments, etc. We often use our personal diabetes experiences to help determine what it is that other people with diabetes might want to know.

Written and clinically reviewed by Marissa Town, RN, BSN, CDCES