I have been a member of the JDRF staff for only 16 months. But as the story goes, JDRF was started by a group of parents whose children had type 1 diabetes. The parents were determined to find cures for their children. And so it began that other families were the focus of the work of JDRF. As the organizations begins its 40th year and at the same time exceeding $100 million contributions annually in diabetes research funding, it is about time that the organization realizes that there is a much larger diabetes world than families with children with diabetes. After all, what happens when the children become young adults? What about the other 50% of those 30,000 people annually diagnosed with type 1 diabetes?
Outreach is now a respected part of JDRF. I believe that the good work of Andrea Hulke in National JDRF deserves a lot of credit. As we conclude our 39th year, Andrea has developed a plan for JDRF to meet the needs of people living with type 1 diabetes through the various stages of life. I think it is a wonderful plan. In JDRF Bay Area we have about 100 adults in our database. We have programs for adults, committees for adults and adult oriented events. Very soon we will have an awesome Adult Tool Kit. So here is our dilemma. Why would an adult recently diagnosed with type 1 diabetes contact an organization — for information or support — called the Juvenile Diabetes Research Foundation? Clearly this is an organization, based on its name, dedicated to the very youngest of all people living with diabetes. Or so it would seem from the JDRF name. The truth is, it is a revamped old name that has equity. JDRF means a lot. When we read JDRF each of us have an unique understanding of what that name represents.
Did you know, that in the ’70s and ’80s there were two types of diabetes mellitus – juvenile onset and adult onset. According to Aetna, type 2 diabetes is also called type 2 diabetes mellitus, adult-onset diabetes, non-insulin-dependent diabetes, or just diabetes. Today the same diseases are called type 1 diabetes and type 2 diabetes. What did they call the 50% of people diagnosed with type 1 diabetes as an adult in the ’80s? Juvenile onset a bit late? In 2010, who would know that several decades ago when a nonprofit was forming the disease had a different name? Actually who would care? Why would an adult in 2010 searching the web for information about diabetes and click on the Juvenile Diabetes Research Foundation if that name came up in the search? I would click right past it. So this is the dilemma.
I have oversight of JDRF Bay Area Outreach, on the other side of the country from National JDRF. I am not sure a name change is likely. I once worked for a nonprofit when it changed its name to better reflect the diseases it represented. I never really liked saying the new name. It sort of always stumbled out of my mouth when I had to say it. Much of the former organization was lost when its name was abandoned.
JDRF Bay Area would like to connect with adults because JDRF has important information to share and support and because we are adults too. Sometimes just connecting with others who also live your struggles, helps. So what suggests do you have for how best to connect with adults and their family’s either living with type 1 diabetes or recently diagnosed and haven’t been living long with type 1 diabetes?
Priscilla Call Essert leads Outreach as the VP, Outreach on the Chapter Executive Board. Carolyn Eisen is JDRF Bay Area’s Outreach Manager. Nancy Cook also works with us at JDRF and she has been living with type 1 diabetes for 52 years. And I am Greg Martin JDRF Bay Area Branch Director. We are eager to hear your suggestions and ideas. We thank you.
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{ 7 comments… read them below or add one }
Please inform the JDRF chapter in my area that adults with type 1 diabetes exist and that we don’t suddenly transform into type 2 diabetics when we hit 19 years old. I’ve tried working with the JDRF because we have the same goal — a cure for type 1 diabetes. However, when I attended their “juvenile diabetes support group” I was informed that “this is a support group for parents of children with type 1. You’re not welcome.” When I volunteered for their speakers bureau, I was informed, “No, this is for children and teens.” When I was invited to a party to celebrate the end of a cross-country bicycle tour to raise funds for diabetes research, the invitation read: “There will be games for the children and opportunities to meet other parents of children with diabetes.” When I inquired about other volunteer opportunities, I was told that they’d LOVE to have my money, but they could do without my volunteer experience (extensive) because I was neither the parent of a child with diabetes nor a child with diabetes myself.
Great post about the problem that so many of us adults living with type 1 have had with JDRF for ages now. I agree that an organizational name change isn’t the answer – not that it would even be considered, as you said – so I don’t know what the answer is. Programming that’s for adults is certainly a step in the right direction. Ad campaigns that include adults would also help us feel represented – although I know an adult who’s lived with type 1 for decades doesn’t pull on the heartstrings and purse-strings the same way as a kid with type 1.
My experience with my local chapter hasn’t been as bad as rainbow’s who commented above, but it wasn’t a whole lot better either. It was alienating, disheartening, and just emphasized how alone I was. Thankfully, I’ve found support online, but what a difference it would make to see my local chapter finally cater to us the way they cater to children and parents.
Coincidentally, later this week, I’ll be posting about some recent interaction I’ve had with my chapter that includes going to an Outreach event tonight.
Yes, yes! I wrote about this a couple of years ago. Please see “Feeling Displaced”: http://www.diabetesmine.com/2007/11/feeling-displac.html — and the many reader comments.
Thanks!
Dear Greg,
Thank you so much for thinking of us old people! I was diagnosed later in life (at 25) and have been living with type 1 diabetes for 17 years now (feel free to do the math). I admit that “Juvenile Diabetes” can be confusing. After all, I was diagnosed as a young adult and “juveniles” do grow up. 50% of people with type 1 diabetes are adults? I can honestly say that I had no idea of that number. But now I feel less alone.
You are right that the name can be misleading. When I did my initial search for information I was perplexed and found myself saying right out loud “Hey, some of us are adults!” But, at the same time, these children tug our heart strings. Daily finger pricks, insulin shots and infusion sets, sluggish highs and trembling lows, relentless maintenance and constant worry – these are my own struggles, just to stay alive. It breaks my heart to think of young children wrestling with this condition, not understanding why they are hurting. So, to change the name from “Juvenile Diabetes” to something else might not serve the #1 goal of JDRF which is to raise funds for a cure. However, there is definitely a need to make us adults feel more welcome.
Dealing with Type 1 Diabetes as an adult can feel extremely lonely. The condition is totally ruthless and requires unwavering attention. As much as they try, family and friends might have a hard time comprehending the situation. Therefore, coping with type 1 diabetes as an adult can lead to depression and alcohol abuse, just to name a few side issues. I try to “forget” about it in between glucose tests and wondering what the sandwich I am about to put in my mouth will do to me. However, it is almost impossible to stop thinking about it. If you do, your body will surely suffer.
Sadly, I do not know any other adults to commiserate with. Perhaps this is due to my own lack of outreach through my early years. But, now that I am older, and now that you mention it, I would love to meet the 100 other adults you reference in your post. It would mean so much to me to share stories and maybe even laugh. After all, misery loves company and laughter is the best medicine. I mean that wholeheartedly – I see my blood glucose levels dip when I am happy and laughing! I encourage JDRF Bay Area to focus on outreach to adults with type 1 diabetes. You might call it JDRF’s Grown-up Table, or something like that.
My other concern is for the parents. As you mentioned, JDRF was founded almost 40 years ago by terrified yet diligent parents of young children diagnosed with this disease. Personally knowing what I know about diabetes, I can only imagine how difficult it is for a parent to face this with their child. It would bring them some comfort to be introduced to adults living with Type 1 Diabetes and to know that their children do have a future. They will grow up to become accomplished men and women who will have the ability to fulfill their dreams.
Thank you again Greg, for bringing this issue to light. JDRF deserves much applause for raising funds and awareness that lead to the advances in treatments that make living with type 1diabetes more tolerable. Hope for a cure is definitely in our future due to the efforts of your extraordinary organization. As an adult who lives with this disease every day, I am very grateful for your insight and dedication to the cause. I don’t mind calling it “Juvenile Diabetes Research Foundation” if it means that the tremendous accomplishments and support will continue as they have been.
Sincerely,
Shelly Jensen
I was diagnosed in 1976 at age 7, a few years after the organization then known as JDF was founded. But when I turned 18, my pediatric endocrinologist told me “Thanks — have a great life” and I was stuck trying to find an endo who had experience in dealing with the unique issues that patients with type 1 face who not only was seeing new patients, but did not limit their clinical practice to children. During those years, I must admit that I did absolutely NOTHING with JDRF (including fundraising) because I effectively outgrew the club.
I think JDRF has to juggle a number of issues. First, while kids with type 1 are great lobbyists, once those kids grow up, their diabetes doesn’t disappear, and they are (too often) thrown into a world that revolves largely around adults with type 2 diabetes. On the other hand, I think JDRF has to juggle a number of issues, and it isn’t easy.
First, while kids with type 1 are great lobbyists, once those kids grow up, their diabetes doesn’t disappear, and they are (too often) thrown into a world that revolves largely around adults with type 2 diabetes. Of course, keeping those families involved with the organization means that JDRF needs to add focus to include ADULTS with type 1, including the different challenges that this group faces. This is a great first step, but perhaps the best thing JDRF can do is to connect with adults in a new way. There are now several hundred adults with type 1 who blog, and social media outlets are a much better venue to connect people who are geographically diverse. Putting all the pieces together (for example, JDRF New England has a fantastic blog featuring videos and presentations from research updates) is an area JDRF National can use some assistance! We’re here with plenty of ideas, BTW!
This is good to hear. I was diagnosed in 1970 @ age 7 (coming up on my 40 years too) and while I was a child, the JDRF was interesting to me because it let me know there were other kids out there with diabetes. However, once I became an adult, it was like I became invisible. I was an invisible sufferer of an invisible disease.
Anyone who I told I was diabetic assumed I was type 2 (I’ve even had doctors assume I was T2) so all the media myths were applied to me (ie it was all my fault, I ate too much sugar, etc). I certainly hope that this new focus on adult T1’s can result in more education of people not only thru the media, but in it
Scott Strange
I’m Type 2 myself, but being plugged into the overall online diabetes community, I constantly see the complaints and frustrations of Type 1 adults whose medical and mental health issues seem to be ignored — both by the general, overwhelmingly-Type-2-oriented press, and by the major outreach/support/research foundations (ADA, JDRF, DRI, etc.)
– Teens and young adults who have grown up with Type 1 diabetes are useful resources, both for younger people with diabetes and their parents.
– Adults living with Type 1 diabetes need different sorts of support networks than do children and teens living with Type 1 diabetes, or the parents of those children.
– Parents of adults living with Type 1 diabetes could probably use their own support networks (“I never hear from ‘X’ and am always afraid *something’s* going to happen”); they could also benefit from being resources for parents of today’s children and teens with diabetes.
And then there’s the other big issue with research: research aimed at preventing or arresting the T1-inducing autoimmune cascade is not going to help children and adults who have been living for years, or even decades, with zero insulin production and no living beta cells. There’s a good argument for skewing research towards the regrowth of beta cells or beta cell function in combination with restoration of insulin-regulatory function and arrestation/cessation of the autoimmune cascade. There’s also a good argument for combining forces with the research arms of other autoimmune-disease-research foundations to increase the number, depth, and funding levels of autoimmune-disease research (and cure efforts) in general.