Juvenile Diabetes Research Foundation (JDRF) seeks input from Adults with Type 1 Diabetes

I just received this email from JDRF today (see below). I think it would be really good if we provided input! JDRF is slowly coming around to recognizing the needs of adults with Type 1, including those with adult-onset Type 1. Melitta

Dear JDRF Volunteer:
In the past year JDRF has recognized that we have been inconsistent in our communications and relevancy to adults with type 1 diabetes. As some of you may recall we are in the process of creating resources and changing our communications to help us address this inconsistency and to help advance our connection. Many of you in chapters may have already begun to see the benefits of making connections with this group a priority. In the past few months, we have already seen more adults with type 1 becoming involved in our Outreach programs signing on as chapter mentors, National ODST members, and through involvement in Juvenation (the average participant are adults with type 1).
This summer/fall we will be launching a new JDRF toolkit for the Adult with type 1, much like the School Advisory Toolkit and Bag of Hope, we expect this resource to foster initial connections resulting in an even greater influx of adults with type 1 coming to our organization. This is great news and we want to be fully prepared to have programs in place that will not only continue to cultivate these connections but foster strong relationships with JDRF and inspire a passion for our mission in these individuals.
We need you, as Volunteers of JDRF, to provide your input, ideas, and/or best practices to answer these questions. Your input is important to us!
• How do we foster strong relationships and a passion for our mission with the adult type 1 population coming to JDRF through our Outreach efforts?
• How do we create turn key fundraising and non fundraising programs for adult type 1 involvement and cultivation?
• Do we have programs already that we can make turn-key? If so, how? What might those programs look like, keeping in mind efficiency and effectiveness of the program?
Keep in mind the mission of Outreach and its goals - to provide meaningful support to create a connection and foster a relationship that results in a passion for our mission ultimately yielding more people, more involved. Additionally, JDRF is the in the process of an internal marketing assessment and your input as it relates to adults with type 1 will be considered in the assessment.
Please email your responses to ahulke@jdrf.org with the subject line, “ADULT TYPE 1 INPUT.” We look forward to everyone’s feedback.

Andrea Hulke Moira McCarthy
National Outreach Department National Outreach

They might want to start by changing their name!

Zoe , well put " short and sweet " …
And how about in Canada a closer connection with the Canadian Diabetes Association and in the US with the American Diabetes Association . No use duplicating services and education and re-invent the wheel . Is this an US focussed initiative at this time ?

Sounds like a good idea to change their name, but stuff for kids MAKES MORE MONEY!

The Children’s hospital across the street from us (the city hospital is next door) rakes in tons of $$$ for seemingly minor stuff … while here we sit.

Hi Nel: I don’t think that ADA and JDRF are duplicating services. I find that the American Diabetes Association’s focus is Type 2 diabetes, and ADA really works against those of us with adult-onset Type 1 diabetes by denying our very existence in the ADA material for laypeople (their scientific journals, however, carry much information on adult-onset Type 1). JDRF’s focus is Type 1, and specifically cure research, and they are certainly coming around to including adult Type 1s. I have read information on the Canadian Diabetes Association’s website on Type 1 diabetes, and they are woefully ignorant (or in denial) of adult-onset Type 1, which represents the majority of new-onset Type 1. Of course, as Linda says, a bunch of [cute helpless] kids are going to get lots more money and focus than adults.

I am going to provide some input to JDRF.


I’ll try again : I did not say , that ADA and JDRF are duplicating services or in my country CDA and JDRF …I tried to say , that I would be concerned if they are ( donors dollars ) and I suggest working closer toghether , than they have so far. A different mandate beweeen CDA / JDRF …JDRF as you mentioned ; CURE , CDA’s four pillars are : education , service, advocacy and cure. If you visit the CDA’s website on the opening page of TU on the left , at this moment you will see at least 4 headlines : 1 ) media release on " new cardiovascular …2 ) CDA 's statement on insulin Glargine and possible link …3 ) CDA summer camps etc…4 ) upcoming events : carb counting .
I as a type 1 am interested in all of these topics . I have chaired workshops with the CDA specifically for type 1’s ( adults ) … I am involved with advocacy and the CDA , have been as part of the group instrumental in getting pumps for kids in our province , more work ahead to get this in place for adults …this is all available on their website. One of my big breakthroughs in life was listening to a woman guest speaker at a CDA Branch meeting about her insulin pump …shortly after this meeting I got the ball rolling to become a pumper as well . Maybe my little story is NOT mentioned on the CDA’s web …however this convinced me, that I do not agree with your statement ,I quote " they are woefully ignorant (or in denial) of adult onset Type 1" .

Hi Nel: That is so great that CDA has been such an important resource for you and others, and it sounds like you have had some really positive influence there. I just wish CDA and ADA would provide better information about adult onset Type 1. For example, CDA’s website says that LADA is a “rare form of diabetes.” LADA is two to three times more common than childhood onset Type 1, making it not so rare. And CDA describes the average age of onset of Type 1 as being in childhood/teens, again not true. ADA includes adult onset Type 1s in the statistics for Type 2. Medical culture, not medical fact. If LADA/adult onset Type 1 were better “advertised,” then I think that fewer people would be misdiagnosed.


Melitta …are we concerned here about semantics , numbers ?? The patient does not care …he wants to be properly treated . If type 2’s take up about 90 percent of the global community with diabetes ,then the remainder is 10 percent ( equals 100 percent ) with other types : kids, adults and anyone in between .I recall reading on the CDA’s website type 1A . type 1B , LADA . When you look in their website’s dictionary under juvenile -onset diabetes I read " the term is not longer used , as type 1 diabetes is also diagnosed in adults " …by the way : I am one of them …I am not LADA /type 1.5 …went on insulin just over one month I was diagnosed as " having diabetes " at age 42 plus. I did read in their website dictionary , which is in my understanding put in simple English language ,since we are a country of multiculturalism , that LADA is " a rare type " and if you go by numbers it is rare, ie less than ??? percent …instead of bickering here about what SHOULD be stated, lets see if one can do something about this and I may contact CDA . I rather hold my then GP accountable for misdiagnosing me …oh , well too long ago : 26 plus years, the day I decided to become pro-active with my diabetes management . I always have maintained that these organizations should work together, including Heart and Stroke , Kidney , that’s how my mind works …well, last World Diabetes Day, 2008 JDRF and CDA did just do that.

Hi Nel: There are lots of myths about Type 1 diabetes, and I do feel that it is important to dispel some of the myths so that people get better care. So I do talk about numbers, because if laypeople and the medical community knew how prevalent adult-onset Type 1 diabetes is, and what to look for, then fewer would be misdiagnosed (as both you and I were). In terms of numbers, another myth is this 10% of all people with diabetes are Type 1, 90% are Type 2. According to John Walsh (“Pumping Insulin”) and many others, rapid onset Type 1 is seen in about 10%, slow onset Type 1 (typically adults) is seen in about 15%, and about 75% have Type 2 diabetes. I have been very active in trying to get both ADA and JDRF to correct some of the misinformation they state about Type 1 diabetes. I have had almost no success with ADA, but JDRF is slowly coming around. I think it would be great if an active volunteer like you were to contact CDA.