Andrea Hulke is the director of National Outreach for the Juvenile Diabetes Research Foundation. JDRF recently launched a new program for adults with type 1 diabetes, including a toolkit which aims to provide resources specific to adults – from living independently, to relationships and starting a family, to work life. Andrea kindly answered some questions for ASweetLife about this new initiative.
What is your position at JDRF?
I am the Director of National Outreach. I lead the National Outreach team which provides tools, resources, training and support to the type 1 community. We work with our 85 chapters and branches to make sure that they have local support programming and networks in place. We also build national resources to fill gaps in type 1 support and resources. Where there are not gaps in resources, we build partnerships to make sure JDRF is represented in the type 1 community. I like to see our department as the operator for type 1 – we don’t have to have all the answers, but we know where to go to help find those answers.
Is there a personal reason why you work for a diabetes organization?
Yes, my dad and brother both have type 1. My dad has had type 1 for almost 50 years and my brother is going on 13 years with it. I’ve always had a passion for making everyone aware of the differences between type 1 and type 2 – and type 1’s impact on the whole person and the whole family. My first research paper in sixth grade was even on type 1! I always wanted to make a difference in the type 1 community. Growing up I always felt there were gaps in resources and support specific to type 1, and I’m so grateful that JDRF has allowed me to work to fill those gaps.
Please tell us about the new tools you unveiled this past month for type 1 diabetics.
Well one of the gaps that became evident to me early on in this role was the lack of resources specific to adult type 1’s – specifically those who are newly diagnosed. I was surprised to learn that there are nearly as many adults diagnosed each year with type 1 as there are children and yet there was a severe lack of resources that spoke directly to type 1’s. Additionally, there was also a lack of resources for established adults with type 1. So earlier this month – JDRF launched our Adult Type 1 Initiative; which is aimed at building programs and resources specific to adults for the various life stages they may go through starting with diagnosis, but also building information and resources for all adults with type 1 on relationships and marriage, pregnancy, diabetes in the workplace, and much more. We started this launch with a comprehensive toolkit that touches on each of the topics mentioned above (plus much more). As we continue to build out the initiative we will build additional tools and resources for each life stage. This initiative also includes local programming through our chapters. So now adults with type 1 should expect to see local support programs and groups forming just for them. The toolkit can be downloaded free at www.jdrf.org/adults or a hard copy can be obtained through any of our 85 local chapters. The Adult Type 1 Toolkit is just the first step in our plans to develop an extensive program to support the needs of adults who have type 1 diabetes. We will be developing additional resources to ensure that all adults have the support they need to live well with the disease. I see the Adult Type 1 Initiative and Toolkit as an immediate necessity to assist a patient group that is currently unsupported, and also as a long-term necessity to continue building the worldwide community of people banding together to make life with diabetes better and some day, to find the cure.
What is the best way for people to get involved with JDRF?
What do you wish people understood about living with diabetes?
My wish is the same as when I was in sixth grade: I still wish there was a greater understanding of the differences between type 1 and type 2. And that type 1 is not something you grow out of or get because you eat too much sugar – it is manageable yes, but it is also a life changing disease that has real mental and physical effects on a person’s life and the lives of their loved ones.