We love grassroots advocates — regular folks who recognize a need in their community and step up to the plate! Earlier this year, we decided these unsung heroes of the diabetes community deserved a spotlight of their own, which is why we launched our Amazing Advocates series. This month, we're highlighting Merle Gleeson, a PWD for nearly 50 (!) years who founded the Type 1 Diabetes Lounge almost 15 years ago. As far as diabetes support groups go, Merle is a veteran!
The Type 1 Diabetes Lounge is a support group and educational organization for PWDs in the Chicago area. Merle runs the group full-time from her home just outside Chicago in Wilmette, IL, where she lives with her husband and two grown children.
DM) Merle, what inspired you to start the Type 1 Diabetes Lounge?
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MG) It was 1998, 35 years after my diagnosis. Until that time I had never known anyone else with type 1 diabetes. For the first time ever I wasn't alone with my diabetes! I also recognized the lack of education, information and resources available during my short doctor visits and was determined to do something about it. My focus from the beginning has been facilitating peer support and the education needed to manage type 1 diabetes as effectively as possible.
So what began with a few women casually meeting to talk about living with t1D has evolved into a non-profit corporation awaiting 501(c) (3) status. As in the beginning, I continue to operate this group on a volunteer basis.
What was your goal for the group: education, emotional support, venting?
The mission is to enhance the lives of adults with type 1 diabetes by providing education, support, guidance, and inspiration. We offer monthly educational and supportive programs provided by medical and technical professionals with topics such as research updates, cutting-edge technologies, management techniques, and lifestyle issues. Members find supportive peer connections in which to share frustrations, anger and fears. We help one another with problem-solving suggestions, and many close friendships have formed over the years.
Besides you, who all is behind the Type 1 Diabetes Lounge?
Occasionally I get help from group members, but for the most part I do the organizing and planning myself. This was not very difficult in the beginning when there were just a few people meeting casually. However, throughout the years the group has grown dramatically — in numbers, goals and activities — making it more time-consuming, but exciting for me.
Wow! That sounds like a lot of work. What are some of the challenges you've faced?
The challenges have always been locating all the type 1 diabetics who desire the services we offer. The group continues to grow with time and consists of newly diagnosed, adult onset, and those living with diabetes more than 60 years. Many parents are now attending the educational meetings as a means of staying up on the latest research and technology.
So how have you spread the word about the Type 1 Lounge?
This is no small task. It requires a great deal of PASSION and COMMITMENT to organize and maintain a successful support group. Reach out to your local hospital or endo offices for assistance. Stress the importance of such a group to the t1D community. Your diabetes team may be willing to promote to their patients and possibly offer a meeting space.
Networking. I'm constantly researching medical speakers to cover topics of interest such as research updates, health and nutrition education, and the latest in diabetes technology. I diligently read everything I can find on diabetes and attend local conferences to meet doctors and medical reps appropriate for our savvy and educated group. I'm involved with JDRF and various advocacy groups including meeting with my Congresswoman.
This month our speaker is an endocrinologist from Northwestern Memorial Hospital who will discuss her special interest; insulin pump and continuous glucose sensor therapies.
What kind of impact has the group had on you personally?
Facilitating this group keeps me closely tied to the diabetic community. I feel obligated to be on the cutting edge of the latest advances and technology. It's the wonderful people I've come to know over the years that inspire me. My rewards are the contributions I can make on others lives and treasure comments such as these from group members, such as:
"I have been having a really tough time since my diagnosis and coming to the support group is the most helpful thing I've done so far. It feels so great to know other people are going through or have gone through the exact same feelings that I have."
"I was diagnosed three years ago and just discovered this group six months ago. In the first meeting, I doubled my knowledge of type one diabetes!"
"I've never been in a room with so many knowledgeable diabetics talking about a way of life only we truly understand. Thanks as always for your support and friendship."
What's next for the Type 1 Diabetes Lounge?
I will continue to facilitate monthly support groups and reach out to new people as long as I am able. My goal is to increase the level of educational events available specific to people of all ages with t1D. Last December, we held our first fundraiser for JDRF. It was a Zumba party with 13 instructors and 100 dancers — what a blast!
Last week, we held an educational luncheon and product fair in conjunction with the University of Chicago Kovler Diabetes Center. I am already contemplating future events and how to celebrate my 50-year anniversary next year. Any suggestions? I'd love to hear from you!
We are so impressed with your commitment to helping folks with type 1 diabetes, Merle! And if you're thinking about starting your own local support group, Merle is the perfect person to talk to!