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?
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.
You have an impressive array of doctors and educators who have spoken to your group. How did you get these folks on board?
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!
The entire north side of Chicago diabetes community owes alot to Merle. For Type 1′s, the Type 1 Diabetes Lounge provides the most comprehensive support group where we can openly discuss our successes and our challenges. Thanks Merle!!!!
Three cheers for Merle’s persistence! I always wished for a group like this (40 years this summer) and about two years ago met Merle. I look forward to hearing the great speakers and to interact with others in the ongoing struggle w/ diabetes.
Merle! Congratulations on an honor so well deserved. For 15 years I have been
in awe of your tireless efforts and continuous support, especially during those really difficult times!
Wow – almost makes me want to move to Chicago. Wouldn’t it be nice if more of us could find this kind of group?
I am a relatively new member of this group with Merle – and it has made a huge difference for me – in learning about diabetes and forging new friendships. We are lucky to have Merle to help us all get along – with our diabetes!
Merle, job well done! I will tell my aunt and other friends and family who have diabetes about your organization. Knowledge can and will help so many with diabetes extend their lives, and allow them to enjoy healthy and longer lives.
I’m so glad I read this post! I have recently come to the conclusion that diabetes has had a much more significant effect on my life than I realized, and that I need support like your group offers. Thank you.
Merle, Congratulations and Kudos on all your dedication! I also have had T1 for 46 years. My passion to help others led me to my career as an RN Certified Diabetes Educator for decades. I have started support groups when working, yet now am not working and would love to participate in your group or start one in Milwaukee. Any advice how to begin without employer support? Thank you.
Hi Judy,
Sounds like you already know what it takes to make this work. As I mentioned in the interview, I reached out to the local Endo offices. The CDE’s should be willing to post or hand out flyers to their patients. If you would like to discuss contact me at merle@type1diabeteslounge.org. Merle
Merle Gleeson, 58, of 314 17th St., Wilmette, was charged at 2:03 p.m. Dec. 1 with retail theft at Glenview Police Department, 2500 E. Lake Ave., for a Nov. 26 incident on the 1400 block of Waukegan Road. Her court date is Dec. 20.