JDRF - should it change its name?

[Northerner]

I recently read a blog by a Canadian blogger who has just done a run for JDRF. She was diagnosed in her 20s however, and expressed disappointment that adults with Type 1 often seem to be put in the background, as if it is only about children. Even the children who are now grown up seem a little forgotten, and I agree with the blogger that it's the inclusion of the word 'Juvenile' - I was 49 for goodness sake!

I know it's a very big thing to change a name for a big organisation like this, but surely it would help their cause if they were more clearly identified with Type 1 diabetes as a whole. I'm not talking about their websites or the work they do, just the public's perception, and even amongst adult Type 1s like myself. Nor is this a T1/T2 issue - no-one deserves diabetes of whatever type in my opinion - but the treatment and issues are often quite different and because we are a minority we often have to sift through the information directed at the majority to find what is relevant to us.

I don't know them, but I would love to see the statistics about how many people get diagnosed with Type 1 as adults in relation to how many in childhood. I believe there are about 300,000 Type 1s in the UK, including about 20,000 children, but not sure how many of the adults grew up with it.

It's possible, of course, that the 'Juvenile' element helps garner more sympathy for the cause, and possible more donations as a result. But, like the blogger, I've never really felt the 'affiliation' to JDRF that I really ought.

This is the blog entry, by the way:

http://canadiandgal.blogspot.com/2011/04/5k-run-for-jdrf.html

 

[mcdonagh47]

I know it's a very big thing to change a name for a big organisation like this, but surely it would help their cause if they were more clearly identified with Type 1 diabetes as a whole. http://canadiandgal.blogspot.com/2011/04/5k-run-for-jdrf.html

The issue of the name has been mentioned on here before ( as also the IDDT). Shiv said JDRF were aware of the anomaly. But she didn't say whether they intended doing anything about it. The term "Juvenile Diabetes" was abandoned by the WHO in the mid 1980s.

Diabetes UK is still legally the British Diabetic Association ( a much more suitable name in my view, placing it in its rightful place at the centre of the Diabetic community).) with Diabetes UK as a working title. Perhaps JDRF could get an everyday working name like that or a strap line such as "JDRF - the Charity working for ALL with Type 1 Diabetes".

 

[Robster65]

I hadn't heard of it until I joined the forum and then assumed, like many, that it was specifically for young people.

I think your idea is a good one McDonagh. It would clarify their agenda somewhat. It must be very difficult for any organisation to change its name, but some additional wording would stop the confusion.

Rob

 

[redrevis]

I agree Alan. When I was diagnosed, at 26. When I first heard of the JDRF I thought it was just for children and didn't really think much more of it, until it came to light months later that it was actually a charity for type 1 as a whole. I'm sure this is a regular occurrence. I really do think that having Juvenile in it's title does affect the amount of people that don't give them the attention they deserve.

 

[SusieGriff]

I agree Alan. When I was diagnosed, at 26. When I first heard of the JDRF I thought it was just for children and didn't really think much more of it, until it came to light months later that it was actually a charity for type 1 as a whole. I'm sure this is a regular occurrence. I really do think that having Juvenile in it's title does affect the amount of people that don't give them the attention they deserve.

Here here!! I was 61 !! and when I first found that site and read it I thought I was a rareity and not normal like most of T1's !!! How odd that they should not change/modify thier name, and direct information to all ages.

 

[Northerner]

Here here!! I was 61 !! and when I first found that site and read it I thought I was a rareity and not normal like most of T1's !!! How odd that they should not change/modify thier name, and direct information to all ages.

Yes, don't get me wrong - I think it's great and very important that there is such a strong resource for parents of Type1 children who will be able to immediately identify it as such. But I was similar in the months after diagnosis - I did the web searches and after briefly encountering the JDRF site decided it had little relevance to me as a middle-aged adult. Of course, there is plenty of information there for adults, but I suppose I was initially deflected by the pictures of children and items about schools etc.

Quite astonishing really that,Robster, you hadn't encountered it even though it had started up in 1970 - 8 years before your diagnosis and hadn't caught your attention for the following 30-odd years!

 

[redrevis]

I would think that the main reason they won't change the name is due to the huge cost that they would incur. A name change of a world wide recognised organisation is no small task.

 

[Northerner]

As an example, I just came across this story:

http://www.liverpoolecho.co.uk/live...e-to-cardiff-for-diabetes-uk-100252-28618541/

I'm fully aware that DUK fund research for all people with diabetes (indeed I was given their introductory guide in hospital and found it very useful), but I wonder if the man taking this challenge, as a Type1, considered JDRF as well in making his decision about which charity to raise money for? In my first race after diagnosis I raised money for DUK, the following year I raised money for JDRF, so I have tried to support both - perhaps this man has too.

 

[redrevis]

Me too Alan. Their beginners guide was extremely helpful. I too was given this at my first DSN meeting at hospital. When I created my T-shirt shop, I decided to give 100% of my profits to Diabetes UK as this was the first charity I was introduced to and that had effectively helped me from the very beginning with their helpful guide. Plus I quickly found their Facebook page and was a regular user of that from the start. But again I too am going to swap to JDRF for my shop donations after giving to DUK for a year.

 

[Robster65]

Yes, don't get me wrong - I think it's great and very important that there is such a strong resource for parents of Type1 children who will be able to immediately identify it as such. But I was similar in the months after diagnosis - I did the web searches and after briefly encountering the JDRF site decided it had little relevance to me as a middle-aged adult. Of course, there is plenty of information there for adults, but I suppose I was initially deflected by the pictures of children and items about schools etc.

Quite astonishing really that,Robster, you hadn't encountered it even though it had started up in 1970 - 8 years before your diagnosis and hadn't caught your attention for the following 30-odd years!

The ONLY organisation I knew of was the BDA. I joined for a few years but didn't really see any benefit other than Balance, which I could read in the clinic waiting room 🙄
I think the reason I hadn't heard of them is because, without the internet, they were never presented to me, nor did I go looking. When I finally heard about them, like you and others, I was an adult and assumed they were irrelevant to me. It seems that they are uietly doing a lot of good but their light is firmly hidden under the bushel.
I would love to know more about them and how they might be of benefit but I'd have to go looking. The BDA/DiabetesUK have always been on the radar and don't need to raise their profile.

If I were JDRF, I'd have a more visible profile on websites such is this. If it weren't for Shiv (who is here in her own capacity), many of us, I'm sure, wouldn't even have heard of them.

Rob

 

[HelenM]

I think that it should change, other charities have changed their names sucessfully when the condition has changed it's name. (eg Spastic society- Scope. I doubt that it will, pragmatically, the image of children is perhaps good for fundrasing and parents of children are also very motivated fundraisers .
Earlier in the year the new president of the JDRF gave an interview outlining the direction for the charity in the next few years.
http://www.diatribe.us/issues/29/diabetes-dialogue.php
I liked what he said but the paragraph including ' moving away from the over reliance on the cure as the central part of our message and funding and another statement 'moving away from an exclusive focus on children and also embracing the adult type 1 diabetes audience.' triggered a long and at times acrimonius discussion on the US CWD forum.

 

[mcdonagh47]

As an example, I just came across this story:

http://www.liverpoolecho.co.uk/live...e-to-cardiff-for-diabetes-uk-100252-28618541/

I'm fully aware that DUK fund research for all people with diabetes (indeed I was given their introductory guide in hospital and found it very useful), but I wonder if the man taking this challenge, as a Type1, considered JDRF as well in making his decision about which charity to raise money for? In my first race after diagnosis I raised money for DUK, the following year I raised money for JDRF, so I have tried to support both - perhaps this man has too.

In Britain JDRF is only a small player - about one tenth the size of Diabetes UK. As such it has a much smaller annual budget for research ( about ?900,000) than Diabetes Uk ( ?8.5million into research). In addition to which you probably will find they are both funding much of the same research, with JDRF chipping into bigger research projects of other bodies.
Diabetes Uk regularly funds research projects over 500,000, the British JDRF couldn't cope with anything like that.

 

[Robster65]

For me, possibly selfishly, better treatment options is a more attractive aim than the search for a cure. I would love a cheap, reliable CGM & pump combo and could cope quite happily for the rest of my days, rather than soldier on with MDI and test meter with a vain hope of a cure that wouldn't be offered to me anyway.

I like their seemingly progressive outlook that tries to listen to what we want rather than being more prescriptive like DUK. I found them very much "one size fits all" 3 decades ago and they seem too big to give much of a personal touch. Probably another misconception.

Maybe we're all on here because there are no organisations that can offer us what we need, so we have jumped over the parapets in search of our own answers.

Rob

 

[Cate]

I'd never heard of JDRF till I joined this forum, I was diagnosed type 1 in 1984, while at primary school. The hospital only mentioned the BDA as it was then, and shortly after that my dad paid for me to be a life member - I don't think that option exists any more!

Certainly looking at the JDRF website more recently, my overall impression was that it's aimed only at young children, and as I'm now an adult it wasn't for me. Was I wrong? What stuff could I access through them that might be useful/interesting/etc?

 

[Caroline]

Until I joined this forum I had never heard of JDRF. My understanding of it is the research they do benefits all type 1 diabetics. Diabetic research Fund would be more inclusive.

From my perspective adding the junior part is kind of like emotional blackmail, because no one wants children to have diabetes (or any other illness) people will be more generous.

One day no one will have diabetes, or CF or arthritis or any one of a number of long term condtitions, we will all be fit and well.

 

[JoeFreeman]

Morning,

(Just to say, these are my personal opinions, not those of Diabetes UK - thought it'd be nice to join the discussion!)

This is a very interesting discussion to read on a Tuesday morning. I know the JDRF have recently launched a pack called "Type 1 - the basics pack for newly diagnosed adults" although looking at the pack itself online it's not immediately clear to me whether this is for adults who have been diagnosed themselves, or for adults who have a child who has been diagnosed? The fact it comes with a cuddly bear makes me perhaps think the latter? (I've not seen a copy of the actual pack itself).

It'd certainly be interesting to read what Shiv had to say on what Northerner has posted, as an "insider" 🙂


From what I understand, JDRF is huge in America, but their size and sense of community hasn't necessarily crossed the water to the UK. Is that because Diabetes UK (or BDA, as were) is/was just more prominent and visible to everyone?

(Again, all my own thoughts!)

 

[shiv]

This is a very interesting discussion to read on a Tuesday morning. I know the JDRF have recently launched a pack called "Type 1 - the basics pack for newly diagnosed adults" although looking at the pack itself online it's not immediately clear to me whether this is for adults who have been diagnosed themselves, or for adults who have a child who has been diagnosed? The fact it comes with a cuddly bear makes me perhaps think the latter? (I've not seen a copy of the actual pack itself).

The KIDSAC pack is designed for children who have been diagnosed and can be ordered by parents, HCPs, teachers - anyone who has a link to a diagnosed child.

The Basics pack is for adults who have been newly diagnosed. And don't worry, you're not the first to question putting a bear into a pack for adults!

It'd certainly be interesting to read what Shiv had to say on what Northerner has posted, as an "insider"

I come to the forum as 'me', not as JDRF - so I won't be responding, to avoid conflict of interest 🙂

 

[Northerner]

...I come to the forum as 'me', not as JDRF - so I won't be responding, to avoid conflict of interest 🙂

Perfectly understandable Shiv 🙂 I hope the discussion is useful to the 'powers-that-be', I'm sure you'll pass the thoughts on 🙂

 

[mcdonagh47]

Until I joined this forum I had never heard of JDRF. My understanding of it is the research they do benefits all type 1 diabetics. Diabetic research Fund would be more inclusive.

From my perspective adding the junior part is kind of like emotional blackmail, because no one wants children to have diabetes (or any other illness) people will be more generous.
.

They haven't really "added" the "Junior part" Caroline.
Juvenile Diabetes and Juvenile Onset Diabetes were the official names of what we now call Type 1 upto the mid 1980s before the WHO changed the nomenclature.
They've been caught in a time-warp rather than trying to tug at the heart strings of donors.
The Insulin Dependent Diabetes Trust (IDDT) have been caught in the same time-warp because IDDM was also replaced by the Type 1 term ( and NIDDM by Type 2).

 

[AlisonM]

From what I'm seeing on here, late onset T1 and T1.5 are far more common that I ever realised. I knew a little about Diabetes from having friends with it, but I never realised until I was diagnosed that there were more than the two sorts, or that you could get T1 late and T2 early. It's all vastly more complicated than I ever imagined and an organisation that doesn't reflect that is eventually going to find itself side lined. So, perhaps it is time for JDRF to metamorphose into DRF in order to more acurately reflect the reality of Diabetes in this century.