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Have you ever volunteered with a diabetes-related organization?
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I’m usually no where near an organization to volunteer .I’m 2 hours from town and my other half does not get much time off to go anywhere.i don’t have a driver’s license.
Barton Center for Diabetes Education
I use to many years ago. JDRF in Wyoming and Virginia.
None recently.
I volunteer at Camp Courage, a week long camp for kids with T1DM. It is one of the best weeks of my summer.
Most of our medical team also have T1DM so it’s great for us adults too.
Many years ago I went to one meeting. They served pizza and real coke at an organizational meeting. I didn’t go back. 😜
I was on the Community Leadership Board with the ADA for 10 years until they closed the office in Iowa. I worked as an RN at a free diabetes clinic at our county hospital. It was so rewarding!!
Yes, but not recently, I used to volunteer with a local Diabetes organization that no longer exists, I use to coach newly diagnosed teenagers and I would explain that T1D is like having a pet rattle snake, you have to feed and tend. But it may bit you anyway.
That REALLY depends on what YOU mean by “volunteered with a diabetes-related organization”.
I have spoken with a Politician in the British Government about how useful using an insulin pump is in relation to treatment of diabetes. (I was the first person in the area of the country that I live to have been issued with an insulin pump (CSII or Continuous subcutaneous Insulin Infusion) and it made remarkable changes to my experience of living with type 1 diabetes.
The idea put forward by my endocrinologist was that pump technology should be made more avaiable to a wider range of diabetes sufferers, and it was he that arranged the meeting between the Member of Parliament (Politician) and myself.
Happily, more diabetes sufferers are now able to utilise [utilize] pump technology in the UK (United Kingdom of Great Britain and Northern Ireland).
I formed a Local Support Group for Insulin Users some 20 years ago. It is rewarding to see some of the kids grown up and now active themselves in supporting others!
Public speaking on living and managing the T1D condition. Quite an honor.
Although, I should add, compliance, listening, and learning are not always my greatest virtues. I tend to talk about real life and real issues, all leaned in the college of hard knocks. I started attending that college at four years of age. I don’t think I’ll ever graduate.
My impression is you have a PHD!
I like to volunteer for research studies that I can participate from my home. I am a senior with T1D, but remember driving to our state capital with our 2 young sons for research. This was in the early 1990s and both were tested for markers of developing T1D. The labs reported younger son was positive, the older sibling negative. Sure enough even after taking pills in the research, positive son was diagnosed in 7th grade.
I volunteered this past summer for ADA camp. It was a wonderful experience! Will be applying again this year.
I am involved with Joslin in Boston. 50 year medalist study and another one studying stomach enzymes.
JDRF annual fundraising drive, big deal in my office- my team has raised on the order of $200,000 over the last 20 years…I’ve also testified before FDA on T1diabetes related topics at the request of some organizations……….and tried to get Medicare to change their STUPID dangerous pump policy requiring quarterly visits in order to get supplies, indefinitely, regardless of need. Some might remember the survey we did w myGlu- showed that 40% of those on Medicare w a pump adopted potentially adverse behaviors in order to cope with this madness, or had adverse outcomes. Medicare officials could have cared less and kept a baseless requirement in place, with no evidence basis for its existence, because we could not get strong enough evidence that it was harmful. This ignores the fact that their was no evidence basis for the requirement in the first place. ADA in their treatment guidelines explicitly states that no basis for mandatory timed follow up intervals exists. So we are stuck w a dangerous requirement.
I donated artwork for a JDRF gala. When I offered to do a short presentation on life with long duration T1 at a public monthly meeting, my offer was dismissed because the time was needed to organize for another fundraiser. I haven’t volunteered for an organization since then. My diabetes-related volunteering has been as a participant in various clinical trials and in 50 Year Joslin Medalist research.
I am a moderator for a DOC forum.
I used to volunteer (ADA events and mailings, JDF fundraisers –I think that was the old name, sponsored support groups, etc.). It was a great way to have contact with others who often had similar issues that we could discuss. Now I guess I get enough contact on-line.
JDRFf and Camp Ho Mita Koda, a camp for type 1 diabetic children.
Yes. I’m a moderator for TUDiabetes, a DOC forum.
I don’t know of any T1D organizations where I live.
yes, JDRF and family members have volunteered as well.
Yes.. but always rejected because I am OLD!! 18 years ago at 70 I tried to get involved with Joslin when I had T1D 50 years.. They wanted proof… All my Doctors were Dead.. I did not want a medal.. just study me to see why I was otherwise so healthy ?? From Sweet Charlie..
I volunteered once to sit at a table for local Winter holiday season: Ginger Bread House with JDRF. I used to contribute $ every year to JDRF hoping to speed a cure. As a college student I volunteered for many research projects at University of Washington and at Pacific Medical whenever I saw a poster or an ad in the campus newspaper. I started a Type 1 Diabetes Support group in my home via a Free University setup and learned a lot from other T1Ds who signed up, very rewarding.
Yes in my late 20s and early 30s with ADA as a peer mentor for young adults with diabetes; from 2009 to 2019 as a PODS Leader and regional representative for for DiabetesSisters.org; and lately as a RN, MSN, CDCES (CDE) two days a month with a free clinic for the homeless and underinsured in Albany, NY.
I use Dexcom G6 and have never had one that I did not have to calibrate a lot, I din’ feel they should advertise as reguiring no calibration