Hey Everyone,
So, in recent weeks, the JDCA has had a lot of internal debate over the state of our current blog. Quite frankly, it needs some work. A lot of work. That’s why this month we’ll be going through a massive re-design, both in content and general look. When we come back there will be a much more user-friendly blog in it’s place, with updates and posts on a far more frequent basis. The neglect is over, and it’s time for the JDCA’s middle-child to come into it’s own.
One of the big initiatives we’re currently working through is content for the new blog. We plan to have it updated much more often, and to have re-occurring columns. One of the content areas we’re working on is an “Opposing Views” section, where we take divisive/hot topics in the diabetic community and have experts sound off on them. For instance, if we’d had the column a month or so ago, we would’ve done an “Opposing Views” on the furor around changing the name of type 1 diabetes, and shown the different arguments for or against it.
I’m placing this here as an opportunity for those who read us to see even more content they would like. If you have an idea for this section, we’d love for you to share it in the comments below. We’d love the see the types of stories you’d like us to talk about.
Until Next Time
–Nick
Things are hectic this week at the JDCA, and as such, I thought I’d try something a little different. As opposed to writing a normal blog post, I’m doing a round-up of some of the diabetes articles we’ve been reading here at the JDCA. If you haven’t been checking out the following blogs/websites, do yourself a favor and start with these posts.
First up, an interesting article from DiabetesMine detailing the problems with the AACE’s New Diabetes Treatment Algorithm. It will make you wonder where charts/data end and the needs of patients begin.
Next is a great post from Kerri Sparling about the issues she had with the last Diabetes Blog Week prompt, which asked PWD’s what chronic disease they’d switch with if they had a chance.
Last, we have I Run on Insulin responding the the controversy surrounding the petition to change the name of Type 1 diabetes which circulated earlier this month.
We might be creating a weekly update soon where we show some of the articles we think PWD’s should be checking out. If you’d be for this, fire back in the comments below.
Until Next Time
Nick
In honor of Diabetes Blog Week, the JDCA will be participating in today’s themed post: Share and Don’t Share.
Here is the prompt:
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?
Hmm, this is an interesting question for me, as while I occasionally blog about some of my personal struggles with diabetes (here and here) more often than not I’m talking about news related to the Juvenile Diabetes Cure Alliance.
Perhaps surprisingly, the posts I hope that my medical team sees are the ones where I discuss bad experiences I’ve had with my endo. Ever have someone sneak up and prick you to get your blood sugar, instead of being asked? Are you currently dealing with the search for a new endo and are finding many discount your opinion? These experiences may have been specific to me, but are common enough that I believe my medical team should see them to know the struggles many diabetics go through. As for things I wouldn’t want them to see? Nothing, really. Considering this a public space, I probably shouldn’t be talking about issues I wouldn’t be okay with others reading about.
Do you blog? What would you want your medical to see/not see? Answer back in the comments below, and if you want, sign up for Diabetes Blog Week here.
Until Next Time
–Nick
When you meet someone new, how long is it before they realize you’re a PWD?
Is it soon after, when you find yourself doing a fingerstick in-between drinks? Or is it weeks later when your pump is beeping like crazy, telling you that your line is blocked, even though you KNOW it’s not? Or is it months later, chatting casually over dinner, when you slide a syringe out and inject yourself at the table?
The point is, everyone has their own time-frame. Recently I had two friends of mine say that if I had not told them about my diabetes, they would have never known. For a moment I was proud, excited at the fact that I manage diabetes in such a way that most people couldn’t guess even after a long time. But then I thought about it more–is that really what that meant? Was I controlling my diabetes that well? Shouldn’t they have seen me testing myself at some point? Should I have told them how to use a glucagon needle, just in case? Explained to them why, out of nowhere, I seem to be running to the bathroom every ten minutes?
Had I been controlling my diabetes, or had I just been keeping it hidden?
I don’t really have an answer, it’s just something I’ve been thinking about lately. When do the people you meet find out about your diabetes? Do you try to keep it a secret, or do you tell them early on? Now I tell people earlier than I used to ( usually about the time they ask what I do for a living), but if I didn’t work at the JDCA pushing for a Practical Cure, would I let them know?
Until Next Time
-Nick
In the past month, we here at the JDCA have seen a few petitions making the rounds on social media, advocating for a name change for type 1 diabetes. Many people believe ( even ourselves, to an extent) that type 1 remains a disease overshadowed by the prevalence of type 2, which keeps it from receiving the level of attention that it should. The answer? Change the name, and create a new categorization for this disease.
This is certainly one way to go about it. While the chances of getting an entire industry ( pharmaceuticals, product development, pharmacists, doctors, endos, etc.) to change the way they’ve been categorizing a disease for years is a long shot, that’s not to say it’s not an unwarranted attempt. One of the issues effecting the funding going towards a type 1 cure research is that fact that in many places, the budgets for type 1 and type 2 research are co-mingled. However, they are fundamentally different diseases, and there are many products/solutions that could be created to help those with type 2 diabetes that wouldn’t do a thing for type 1 diabetes (and vice-versa).
In the end, only money being spent on cure research SPECIFICALLY for type 1 truly stands a chance at such a goal, and the treatment of type 1 and type 2 as the same disease will only service to impede it. We speak about this in an older report of ours, Myths Surrounding a Type 1 Cure, and you should definitely take a look at it to see some of the other mistaken beliefs holding back cure progress.
Until Next Time
Today it finally felt like springtime.
Those of you living in warmer states (or countries) may not have been waiting for the change of seasons as intensely as those of us in New York, but I was grateful to shirk last week’s 40 degree highs for 60 degrees today. When I go to work I walk past Central Park, and while it’s a scenic getaway in the summer, the past few months have kept it nothing more than a forest of dead, twisted trees.
Today it was different. Everything felt alive. The birds were chirping, the flowers were blooming, and I saw a massive sign asking me to WALK FOR A CURE for type 1 diabetes.
Oh, springtime.
In the non-profit world, springtime is the season for giving. If you’ve been following us for a while, you know how the donations given to the major diabetes charities are not being spent on cures, or at least not to the degree they should be. Currently, with the four major charities combined ( ADA, JDRF, Joslin, DRIF) only 3 cents of every dollar is going to a cure.
We don’t want you to stop walking, or riding, or dancing, or racing or whatever other physical activity you can do for a cure. If money stops being raised, type 1 diabetes will get nowhere. The important part is to make sure to STIPULATE YOUR DONATION for a Practical Cure. Attaching a simple letter to your donation can mean the difference between having all of your hard-earned money going to cure research, and only having a tiny sliver of it winding up there.
Maximize your donation, and push for a Practical Cure.
Until Next Time
–Nick
Over the past few weeks, we’ve been inundated with emails, questions, and phonecalls about the DRI’s Biohub announcement and whether or not it fits into Practical Cure Research. We’ve been holding back saying anything until we had ample time to truly analyze the different aspects of the project, and it wasn’t until two days ago that we published our thoughts on the initiative.
Some quick background: About a month ago, the DRI came out with a press release for their biggest project, the Biohub. The short version is that it would be an implant in the body of beta cells (protected/housed in one way or another) that would function as a pancreas. The most exciting prospects of the project were that many different facets of research were being developed simultaneously to create the Biohub, and that there were multiple solutions should an initiative fail ( i.e. multiple types of ways to protect the cells are being tested). Therefore, the viability of the Biohub is not dependent on one individual project.
Now that we’ve had to the time to truly examine the project, we’ve concluded that the initiative is a great step forward for Practical Cure research. You can read our full report here, but suffice to say, a majority of the project looks incredibly promising. While we’re not happy with absolutely everything ( some of the funding areas are murky, and it’s not a time-bound initiative), this is a great step forward, and something the other charities haven’t caught up to.
We still encourage you to stipulate your donation to ensure that your money is going to the Practical Cure aspects of the project, but we are excited to see how this initiative unfolds in the coming years.
Until Next Time
–Nick
Howdy folks,
At the tail-end of last week, the JDCA released a new report entitled ” What are the Characteristics of Practical Cure Research Projects?” This is a report in response to many of the questions we’ve been asked lately–what projects do you consider a Practical Cure? How do you tell if one could fit the criteria? What are the scientific avenues that could lead us there?
The report covers all of this and more. I highly encourage you to read it, both to get a greater understanding of the current projects we believe could be a Practical Cure, and to get an idea of how projects may make it on the list. But more importantly, the end of the report shows that out of ALL type 1 diabetes funding, only 2 percent goes towards Practical Cure projects. Only 2 percent goes to research that could help diabetics in a few years, instead of a few decades.
Does that seem right to you? Is that okay? Shouldn’t projects that could help diabetics in the near future be prioritized over ones whose fruit couldn’t be picked until decades from now?
If you believe that they should, make sure to join our Alliance by visiting our website at http://www.thejdca.org, and stay on top of the fight for a Practical Cure. In addition, don’t forget to STIPULATE YOUR DONATION if you’re giving to a diabetic charity, and ensure your money is going to a cure.
Until Next Time
-Nick
This past weekend, two large meet-ups in the diabetes world occurred. The first was the JDRF Type 1 Diabetes Research Summit in Bethesda, and the second was the ADA Diabetes Expo in New York. Both our director of research and my manager went to the Research Summit, while I and fellow co-worker went to the ADA Expo.
We knew going into the event that it would be largely type 2 focused, but we still wanted to see what would be on display, and maybe we’d meet a few fellow T1′s interested in the fight for a Practical Cure. What I didn’t expect was to find a large percentage of the show floor being dedicated to companies hocking their products at the crowd. I’m not talking about pump companies, or trying to sell people on new testers. That I understand, and it’s par for the course when it comes to the diabetes industry.
The thing that sums it up best for me was a booth sponsored by McDonald’s explaining to people how they could eat healthily at their fast-food restaurant. Perhaps this is showing my own personal bias, but really, can we all just agree that if you’re watching your health–even ignoring your diabetes–you probably shouldn’t eat fast food too often? My co-workers who went to the Research Expo had a vastly more exciting experience, and our now back in the office analyzing many of the projects shown to see if any of them fit our requirements for a Practical Cure.
Have any of you ever gone to such conferences? What was your take-away from them? Respond on Facebook or the comments below.
Until Next Time
–Nick
This weekend my tester officially died.
It had been on it’s last legs for a while–through some fluke of luck, I’d managed to keep the One Touch I received at diagnosis for a little over a decade. Kudos to the little guy for chugging along all those years.
Anyway, this weekend was the time to get a new tester, and I was shocked at just how many there are to choose from. Forgive me for the ignorance on my part, but since I’d kept the same one for so long, I had no idea at how many options existed. Beaming meters. Meters attached to a usb. Ones that look just like your cellphone. Ones that graph out your recent blood sugars. It was like trading in a Betamax for a Blu-Ray.
Innovation in diabetes is an interesting thing. On one hand, I’m glad that we’ve moved onto more sophisticated devices. Things would be much harder if we were still stuck with the tech from a few decades ago, and there is no denying that these advancements had improved the lives of diabetics everywhere.
On the other, these devices are a business. They’ll continue to improve and evolve ( heck, maybe one day there won’t even be a fingerstick), but they will never cease. They’re not designed to. They’re from companies who need to make money in order to stay afloat, and a Practical Cure is an antithesis to this.
Today we released our newest report, ” What Must Change to Achieve a Practical Cure by 2025“, and I suggest you all take a look at it. It surveys many of the problems inherent in the industry, but more importantly, shows how the power to change it all really rests in your hands. While I’m grateful for new tech, we need to look past the upgrades and towards an end to the disease.
In the meantime, I’m going to be sorting out which tester I’m going to carry for a while.
Until Next Time
–Nick
