The Power of Communities: An Interview with Mila Ferrer
In June 2017, the board of directors of the Diabetes Hands Foundation (DHF) announced that the organization would stop its operations. Since 2008, DHF was a leading force in the diabetes community, joining efforts for type 1 and type 2 diabetes initiatives in different languages and geographical locations. Although DHF ceased operations and its programs, the two communities that the organization managed—TuDiabetes.org (in English) and EsTuDiabetes.org (in Spanish), continued with their operations given that Beyond Type 1 thereafter became the new home for TuDiabetes.org and EsTuDiabetes.org. We talked with Mila Ferrer, who is in charge of both communities to tell you about these programs that are part of the Beyond Type 1 portfolio.
Can you tell us about yourself and your personal relationship with diabetes?
I am from Puerto Rico, I am married and I am a mom of three wonderful young boys. I always knew I wanted to be a full-time mom—I studied marketing and public relations, although when I was little I used to say I was going to be a teacher or a doctor. What I didn’t know was that the future had planned for me to be a teacher, doctor, nutritionist, nurse and pancreas for one of my children.
12 years ago, my youngest son Jaime, was diagnosed with type 1 diabetes. At that time he was only 3 years old and I must confess that I had no idea that such a small child could develop this health condition. We felt as if we had been thrown into an abyss, that we were swallowed into a whirlwind—everything was very confusing, new and we were very afraid. I had a history of diabetes in my family, but it was type 2 and I could not understand how this could have happened.
I immersed myself in social networks and began to devour knowledge about type 1 diabetes. I kept looking for advice and experiences from other families who were experiencing similar situations. I acquired information and learned a lot, and I met other families but none of them were Hispanic, none of them spoke my Spanish language. That’s how I decided to create a type 1 diabetes blog called Jaime, mi dulce guerrero (Jaime, my sweet warrior). That was my therapy and it opened the door to this global world of diabetes.
What is the relationship between the EsTuDiabetes and TuDiabetes communities with Beyond Type 1 and what has been the most important change in both communities after Beyond Type 1 acquired these programs?
In 2013, I started working for the Diabetes Hands Foundation. This was a small foundation but with a huge heart. My goal was to prevent anyone who had been touched by diabetes from feeling alone. DHF had several programs, and the TuDiabetes and EsTuDiabetes communities were the most important ones.
TuDiabetes (English) was created in 2007 and managed to fill a large gap in the diabetes community, providing a safe, supervised and open space to talk and exchange experiences about diabetes.
A year later, EsTuDiabetes (Spanish) was created to serve the Spanish-speaking community in the United States and the rest of the world.
The administration and sustainability of non-profit organizations is a very complex and sensitive task and standing before the possibility of ceasing operations, Beyond Type 1 made the courageous decision to absorb our communities and make them part of their programs. After the transition to BT1, the task of updating and modernizing the look of the communities began, in order to make them have continuity as an umbrella organization.
What is the objective of these communities? Their purpose and goals?
The objective and goal of the communities remain the same: we want people with diabetes, their relatives or friends to have a place to ask questions, where they can talk and where they can feel understood. We believe that our peers are our best teachers and counselors, and we seek to promote that type of dialogues in the communities.
What are the biggest challenges for both communities?
When the communities were created, social networks began to become popular and not many people used them. TuD and ETD filled that space and it was the “go to place” for those who needed diabetes information or support. Today, we know that there are many ways to communicate, there are thousands of Facebook groups, blogs, influencers and all of them share valuable information. The biggest challenge we have is to stay relevant and to continue drawing more people into the forums because we have a vast and very complete variety of topics.
What issues and what information can people in both communities find?
In the communities you can find any information from the most basic to the most complex. The members of the communities share recipes, experiences with their treatments, they ask questions… in short: everything that someone living with diabetes will need at some time or another.
Among the most popular topics, we have new diabetes technologies, food and community chats. You can be sure that by asking any questions you will receive the best answers from members who have been living with diabetes for decades.
What is the role of the team of volunteer administrators in both communities?
As it is frequently said, this is a team effort and our forums are extremely fortunate to have a team of volunteer administrators who work tirelessly to make sure everything is working smoothly or to help those who have any questions.
Some of our administrators have been members of the communities since they started and they have seen how the communities have grown and evolved over the years. Among the responsibilities that our team of volunteers has is to monitor the conversations and make sure information provided is correct and that community policies are followed.
Our administrators are the heart of the communities—without them the wheel would not turn.
Why would you invite people to participate in these communities?
Communities are a source of endless knowledge because our members are wonderful and they share their experiences selflessly! This allows you to get answers, receive the best advice and the right words of encouragement for every unexpected situation that diabetes throws your way.
Come and visit us!
Why is it important that we participate in Beyond Type 1’s fundraising campaigns?
When we support BT1’s fundraising campaigns, we are contributing our support and helping education efforts among peers to continue paying off. We must remember that at some point we have all been beneficiaries of the information that it provides, we have met people who have changed our lives or have simply reminded us that we are NOT alone.
There are millions of people living with diabetes in the world, we have many lives left to touch, and for that we need your help.
What are you currently working on? Should we expect new content or changes in the communities?
As I mentioned earlier today, we focus on continuing to change and improve our social networks, information and platforms. In this way, we intend to keep relevant and up to date with the changes.
Diabetes information continues to change and to be updated every day. We are committed to continue sharing everything and whatever may be of interest to the diabetes community in general. I feel very positive about the future because I know that great projects are coming our way that will complement our forums greatly and they will be another educational venue for others.