46 Comments
Have you ever volunteered with a diabetes-related organization? Share more about your experiences in the comments!
You must be logged in to post a comment.
© 2023 T1D Exchange. All Rights Reserved.
I volunteered with Beyond Type 1 and put up diabetes awareness posters around my area. Then I never heard from the organization again.
YES…. with Joslin…. They wanted Proof from my Doctors… who were all DEAD !!!
Yes – as a young adult peer group facilitator and leader in the 1980s with Long Island and NYC ADA chapters; as a PODS leader for Diabetes Sisters from 2009 to 2020; and as a RN, CDE for TCOYD events.
I volunteered with JDRF for Gingerbread House fund raiser one day one winter. At that time JDRF was mostly parents of T1Ds. I also used to make monthly donations to JDRF to “find a cure.” No cures, but I guess JDRF can be credited for research leading to insulin pumps & lobbying for and publicizing their use.
0n my own initiative I ran a UW Experimental College type 1 diabetes discussion group in my home. We learned from each other meeting weekly for 3 months.
For both Joslin and JDRF. Collected donations at a movie theater for Joslin twice, pre-Covid. Been volunteering for JDRF in one way or another since I was a kid. One Walk, holiday gift wrapping, Children’s Congress, Online Diabetes Support Team…
Unless you live in a too rural an area, there are probably diabetic support groups everywhere.
I once sat in the back with another guy and we compared pump indicators and directional arrows. Guess we were talking a little too loud. Anyway, he said, “194” and I said “See ya one and raise you two.”
The room erupted in laughter. Maybe they thought we were playing poker.
30 years on the Board of the Barton Center for Diabetes Education. Past chair and current Treasurer.
Diabetes Center of Excellence for UMASS Medical School.
I wasn’t counting being a Medalist with Joslin although you did have to submit all kinds of things for proof of longevity. I did go there twice for all kinds of testing and I had to “volunteer” in terms of agreeing to do it.
Yes, with JDRF. Also volunteered with my brother when he was a medical student at Maimonides Hospital where they were studying gestational diabetes.
I didn’t directly, but did work on getting speakers for a support group.
When the ADA had a state affiliate system, I was the chairman of the NJ affiliate Government Relations Committee. We got a bill passed in NJ that mandated coverage for all diabetes related therapies, medicines and supplies (back then, insulin and testing supplies weren’t covered by most insurances b/c they were not prescription meds). This was the second such bill passed nationwide. The reason it was newsworthy was because we convinced a GOP legislature to pass it and a GOP governor to sign it into law. After our success, I worked with the national organization to train others to repeat the process in other states and to lobby Congress for an analog bill for medicare medicaid.
Spectacular efforts & accomplishments, eherban1 wherever you are!
Now you might help get Medicare’s $35/month insulin copay to apply to pump users. Ack!! I learned today that it doesn’t consider pump-delivered insulin to qualify under the brand new 2023 bill’s cap on copay!!! Impossible to imagine how IBX Keystone65HMO Basic Rx had their lawyers find that ‘loophole’ in the federal law!
Just one of the grotesque idiocities that insurance layers over & through its plans IN CONTRAVENTION to what was indisputably the intent of Congress & the President – to cap the diabetic’s out-of-pocket spending for insulin.
Here in Philly, I’ve become infuriated & expecting to put in my first ever volunteering as a “diabetes lobbyist”!
Have been a member of the ADA for decades and served as Board Member, including Chair and ‘educate’ legislators in diabetes-related matters including various legislation drafting and passage. Provide pro bono services for people with diabetes including children in 504 and IEP matters and prisoners.
I am a PODS leader for women with diabetes in the greater Boston area. We have monthly zoom meetings offering peer support and education.
What is PODS?
I am TID 58 years. I have offered to volunteer at JDF and Bonfils in Denver several times. I have been totally ignored and received no response in any case.
Diabetes Canada
JDRF
I am a moderator for a smaller diabetes forum.
I volunteered as a participant in the Joslin Medalist Study in 2009 and 2017.
I am a member of about 30 diabetes support groups on Facebook. I have made many posts there to help in the understanding the disease. I also post about the history of type 1 diabetes, starting in 1945. Many FB friends like learning about diabetes management in the past.
I was on the ADA board for a number of years and felt like I was on the payroll. When the office closed, because there was no staff, I dismantled the office.
Camp Ho Mita Koda located in Newbury Ohio. Camphomotakoda.org
Also JDRF
My mom started our local chapter of the ADA and ran it for several years until it closed. Then starting in my early 20’s I volunteered for the ADA doing young adult weekend getaways, besides working for them during the summers until I had a family of my own.
More recently (the last 10-15 years), I have occasionally volunteered with the local chapter of the JDRF besides ADA at their walks, teaching todays kids about diabetes, mentoring newly diagnosed diabetic families, and letter writing lawmakers for change in health care policies and access to care to care for diabetics.
I use to coach newly diagnosed teen. I would tell them to treat T1D like a pet rattlesnake, feed it carefully, treat it with respect, but thet are ornery and may bite you anyway.
After my dx at age 10, my parents became very involved in what was then called the Diabetes Lay Society of Washington, DC. They often “volunteered” me to help as a hostess at meetings, etc and occasionally appeared as a speaker in a youth panel.
My doctor would send me to visit newly diagnosed T1 teenagers when they were in the hospital. I remember feeling awkward at the time, but in later years I was told that meeting another person their own age was really helpful.
JDRF in college
I’ve been a moderator for the TUDiabetes forum for 8(?) years or so.
I checked “no” because I don’t consider Joslin a volunteer organization. I’m enrolled in the Joslin 50 Year Medalist study, have volunteered 4 times for a variety of clinical studies with Joslin. Twenty years ago I donated a portrait drawing gift certificate to the local JDRF fundraiser. Although I learned it received bids and was sold, I was never contacted by JDRF or the winner.
JDRF and ADA of course and I moderated a Local Support Group for Parents and Kids but paid special attention to http://www.insulin-pumpers.org/
I was the chairman of “Outreach” for the Diabetes Society of the Santa Clara Valley in the late 70’s and early 80’s.
I am in the 50 year medalist study with Joslin in Boston. I have traveled there 3 times and have done bloodwork locally.
Although I selected no, that REALLY depends on what YOU mean by “volunteered with a diabetes-related organization”. I was the first person, in the area that I live, to have tried pump technology. It was dependent on how well I coped, and how the technology suited me as to whether others would have been allowed to trial the technology.
Haven’t found a local group in my area.
I put “no” because I didn’t really consider helping to raise money for JDRF volunteering…but now that I see others’ answers…maybe I was mistaken? I mean, it was more sharing my team link online so that doesn’t feel like volunteering haha
I have only been involved in a few 50 year Medalist studies.
57 years wt T1D. Have volunteered 19 years with Diabetes Youth & Families camps (camp nurse for the 2 month season) & Dogs4Diabetics since it started in 2004. Also several Zoom support groups in the SF Bay Area. I find it invigorating to have a Diabetes Community.
I have been a volunteer at our Pittsburgh chapter of the ADA, every year the ADA has a week long camp for kids with T1DM. I volunteer on the medical team and I can truly say that it is one of my favorite weeks of the summer.
Years ago, while in college, I volunteered with a local chapter of the American Diabetes Association. Mostly involved with fundraising activities.
Yes. As a volunteer with DiabetesUKNI I present my lived experiences of having T1D to undergrad pharmacists and midwives; speak to people at agricultural shows about life with diabetes including signs, symptoms, challenges and peer support; also help develop peer support programs and social meet ups.
I figured after 36 years that, as a T1D, I needed a different approach than T2D. I got involved in a Québec association dedicated to decrease our mental load, which means to address any obstacle that stands in front of our physical and mental health. 70% of DT1 patients don’t get below an average 8.5 mmol, T1D is still too complex to avoid related complications.
I work with DiabetesSisters! Love meeting with women who have either Type 1 or 2 and supporting/helping them on their diabetes journey!
I sometimes think maybe I volunteer too much… but I can’t imagine not doing so! I am on Camp Nejeda’s walk-a-thon committee, I volunteer in the adult programming of the Children with Diabetes Friends for Life conference, I help moderate the Loop and Learn facebook group, I show up to help at local JDRF and ADA galas, walks, and rides. Diabetes is a huge part of my life and I like giving back so volunteering is a very natural way to do that!
I was a “mentor” for JDRF before they had mentors and were still called JDF. I had been helping out in the office near my home and after listening to me on the phone the director asked if I would be interested in speaking with newly diagnosed T1D’s who had questions. I said, “Sure!” and so I started. A few years back I called my local chapter (I have moved, so new locale) to offer my help. I was told that this position is now called a mentor. Guess I was one of the firsts! 🙂
I have also volunteered for the walks/runs and the Gala.
Clinical research is important across the health care industry – it is how we have all the things we count on for our personal health care: appropriately educated and practice-tested physicians, nurse, technicians; medications & therapeutics; diagnostic criteria, identification, treatments et al; the entire range of devices from lab analyzers, thru ambulatory sensors/monitors, wearable/portable maintenance systems like pacemakers, insulin infusion pumps & continuous glucose monitors – just to skim the massive depth of what we all benefit from. One way that they all come to us is via human clinical trials.
I have volunteered as a patient in a handful of such trials.
I have been a camp counselor for the ADA at a camp for kids with diabetes. I have also volunteered at JDRF One Walks and was an intern at the JDRF Advocacy Office
When I was first diagnosed 23 years ago I went to a planning meeting for a run/walk. They served real coke and pizza. Never went back.