You know the old saying that you don’t know what you’ve got until it’s gone? Well, this past year I had to get a new endocrinologist, and I’m finding out that not only was my previous diabetes educator fantastic, but it’s incredibly difficult to find someone whose really good in the field.
Dr. Wolfart (my old endo) was great–she was funny, friendly, meetings were quick, she gave good advice if there were any issues, and she had enough faith in my control to not micromanage.
Some of you may be laugh at this, but I assumed all endos were the same.
Last year I finally had to say goodbye to her and get a new doctor, and what a process this has been. I was referred to an endo she trusted, and for a little bit, things were fine. We got along very well, and she shared a bunch of the qualities I appreciated in Dr. Wolfart. Unfortunately, she soon gained a position teaching at a local university, and now only works at the hospital one day a week (Wednesdays, oddly enough). Given that I work in NYC and her office is in Upstate New York, that doesn’t really work out.
So now I’ve been through her “helpers”, who are anything but ( you can check out my earlier post HERE on my experience with them). One of the problems with managing diabetes is finding a solid endo who balances understanding with helping you improve your control. So far, my experience has run the gamut of not trusting me ( despite the fact that my H1C is almost always 6.0), to being easily confused by my questions, or being wholly unavailable.
Are you happy with your endo? Has finding a good one been like picking your way through a “Where’s Waldo” book? What have your experiences been like?
Until Next Time
Is it February already?
Time is passing by quick here at the JDCA. At the tail-end of last week, we released our newest report entitled, ” Do Donors Feel That Cure Research is Important?” The report was drawn from a blind survey of over 200 PWDs to see just how many people believe Practical Cure research is not only important, and if it should have a major spot on the agenda of every charity. After the results came in, we just had to share them with the rest of you.
As you can see in the report, a Practical Cure is widely preferred by nearly everyone asked when compared to an idealized cure, or even other non-profit initiatives ( treatments, prevention, awareness, etc.). Even more encouraging, many people who have not donated to ( or supported) the major charities in years would do so if they found out a Practical Cure was a major initiative.
That’s incredible. People who have not been invested in non-profits for years would suddenly be invested again.
Even disregarding the Practical Cure preference, a cure was cited as the number 1 reason why people donate, with 81 percent of participants stating that this is what they have given money, and what they continue to give money for. How is it that 80 percent of people are donating for a cure, whereas not even 1/3 of all donations are going to such things? This is a massive discrepancy the charities NEED to start paying attention to.
I highly encourage you to look at this new report and some of the data therein. We are not alone in wanting a different approach to cure research, and slowly, people are starting to show their support for a Practical Cure.
Until Next Time
With the last week of January upon us, some of us are already questioning our New Year’s resolutions. Getting to the gym is proving to be more difficult than you thought. Working that extra job to save up money is cutting so much into your sleep you don’t know if you’ll be able to keep it up very long. And just what exactly are you going to do to impress your boss and get that promotion?
Whenever you resolve to change something–to do something new–there is always doubt. Doubt over whether or not you can accomplish it, doubt over whether or not you have the strength to make it to the finish line. The big picture always looks vast and treacherous, but if you take a closer look, the individual steps are much easier. Change is a marathon, not a sprint, and you can’t lose focus on the next step by staring at a finish line that’s miles away.
One of our resolutions this year is to grow the Alliance even further. We’ve gained hundreds of new members over the past few months, and the larger we become the more power we have to get the changes we desire. We want to get as many T1′s and their loved ones in the Alliance so when the time comes this year for action, there can be a massive groundswell.
First, a tiny bit of housekeeping. Some of you may have noticed that a few weeks ago our website underwent a big change. We haven’t publicized it much because we had to spend a few weeks working out some kinks, but now we’d love it if you’d take a look at the re-designed JDCA website at thejdca.org. To those of you who posted photos of yourselves and loved ones in November, check out our sliders. More of you will be put up in the coming weeks, but this is where we’ve started.
The decision for the new website was easy to make–our old site was unprofessional and confusing to use, and now that we’ve grown so much it was time to step things up a notch. In the past year, we gained nearly 4,000 new Facebook likes, and that number is climbing every day as more people decide to unite their voice for a Practical Cure.
If you haven’t signed up for the Alliance, do so. If you’re already a member, and know someone who might be interested, direct them to our website. The more of us there are, the stronger our cause becomes. This year we’ll be doing some big actions with our members that you’re not going to want to miss. The bigger we are, the louder our voices, and the higher the chance we make some major waves this year.
Join the Alliance, and unite your voice for a Practical Cure.
Last week, the JDCA put out it’s newest, shortest, and possibly most surprising report to date: How Do Non-Profits Measure Cure Progress? We contacted the high-ups of the four charities to find out what ( if any) measures are used as indicators of cure progress. The results are illuminating, and show exactly why progress has been so slow to come.
So just what do non-profits measure themselves by? Unfortunately, nothing that has any tangible effect on cure progress. The three main areas include: expanding the general diabetes knowledge base, publishing reports in scientific journals, and attracting new talent. While the importance of each varies depending on the charity, these are the major guideposts they use.
Clearly, none of these are good indicators of how close we are to curing this disease, or if research is progressing in the right direction. In fact, looking at these three measurements, it’s quite clear how many research areas could be flawed in their approach. If a major goal is to gain new talent, could many promising projects get dropped in the effort to have a portfolio that looks more attractive to scientists? If publishing reports is a major goal, than will we wind up conducting research in a different manner than if we were solely trying to get rid of this disease?
I suggest you read the report ( at one and a half pages, it’s the shortest we’ve ever done) to get some of the finer details. Do you disagree with these measurements? Do you think this system needs to change? If so, sign up for the Alliance and show your resolve for a Practical Cure. Only by banning together can we cut through the oversights that are crippling true progress to a cure, and your simple show of support is the first step in that direction.
We’ll soon be using the Alliance soon for bigger things, and if you’re serious about a Practical Cure, you’ll want to be a part of it.
Until Next Time
A Practical Cure.
If you’ve known us for even a little while, you know this is what we’re after. There are projects in the system that, if fully funded, have a great chance of bringing forth a Practical Cure by 2025.
What is a Practical Cure? The characteristics of these projects are simple: they would require minimal monitoring ( only requiring 1 BG test a week while keeping A1C’s between 5 and 7), allow for an unrestricted diet, contain minimal side-effects, and allow the patient to sleep worry free. If the cure is pharmacological it must be an easily managed regime, if surgical, a recovery time of less than 72 hours.
Those are the guidelines, the clinical measures we use whether or not a project could deliver type 1 diabetics a Practical Cure by 2025.
But that’s all they are. Clinical. Cold. Objective. They’re useful for helping us cut through the fat, but not for showing what a Practical Cure looks like. They don’t show the pump supplies being thrown out in the trash. The teenager swimming in a lake and not needing to get out and test their blood sugar. Parents that don’t have to stay up worrying about their child when they’re asleep. No more needles, no more pricks, freedom to eat what you want, being able to exercise without having to plan for what might happen if you go low.
This is what a Practical Cure is. It’s ease. It’s relief. It’s not having to deal with all of the minutia and carb-counting and BG correcting and just being able to live your life.
If you support a Practical Cure, join the JDCA. If you haven’t already become an alliance member, the sign-up is below. You’ll be adding your voice to thousands of others who are demanding that resources be put towards a Practical Cure.
The Alliance: http://www.facebook.com/thejdca/app_141428856257
Until Next Time
After going silent for a few weeks, the JDCA is back in action. We hope you all had a Happy New Year and managed to enjoy whatever time off you had, but now that we’re back, I want to talk about a question that constantly comes up this time of year.
Why do so many New Years resolutions fail?
Its the world’s perpetual joke–every year, people make New Year’s resolutions to change and better themselves, and every year people say how they’re useless and many of them don’t work. And in truth, most resolutions are never completed, merely thrown back into the recycle bin until the end of the year when we decide to give them another try.
Why does this keep happening?
Part of it is in the planning. Most resolutions never set a goal beyond a basic wish. This year I plan to lose weight. Well, how? Are you going to join a gym? Do you have the extra money to pay for it? How often will you work out? Where will you find the extra time to do this? What about eating right? Are you going to change your diet? Can you set aside time for cooking healthier meals?
It’s the small questions that can derail you. Change is not a sprint, it’s a marathon. If you’re not focused on the long-game, you’ll never make it past the starting gate. You need focus, planning, deadlines, and time-tables if you actually plan on seeing your resolutions through to the end.
So what do you plan to accomplish in 2013? In the next few weeks we’ll be talking about some of our newest initiatives, but for now I’ll just give you a few of my personal ones. Feel free to comment below with some of your own.
On my plate for 2013:
1. Lose 20 pounds. The year and half after college has not done my body well with the constant sitting and lack of gym membership. Yesterday I signed myself up to planet fitness to actually get this goal on track.
2. Leave the country. This has been a long time coming. I’m 23 years old, and so far I haven’t traveled outside of the U.S. A week ago I received my passport, so this year I’m going to be saving for my first trip out of our borders ( probably to South America, but we’ll see).
3.Get more people to Join the Alliance and push for a Practical Cure. We’ve been growing steadily ( and had an explosion of new members the past two months), but I’m resolving to get more people in the Alliance. The more voices we have, the stronger we become.
There are a few more on my list ( mainly relating to my freelance work outside of the JDCA), but I’ll hold off on those. What are you trying to accomplish, and how are you making sure you don’t fall short? Fire back on facebook and the comments below.
Until Next Time
P.S.: I’m going to leave the Alliance sign-up down here for those of you who want to join as well: http://www.facebook.com/thejdca/app_141428856257
Across the street from our office the ponds in Central Park have frozen over, and from the window I can see parents trying to teach their kids how to stand in clumsy iceskates. Chopped up pine trees line the blocks on my walk to work, and it seems that nearly every building I pass is wrapped with lights, culminating in a massive snowflake sculpture suspended 50 feet about 5th Avenue. I don’t know how it crept up on me this year, but with Chanukah wrapping up and Christmas rounding the corner, we’re officially in the holiday season.
The past few weeks have flown by as we’ve prepared for a flurry of changes for next year. Last month we had people of all ages sending in their photos with quotes about what Diabetes Awareness Month/A Practical Cure meant to them. We actually found the response overwhelming, but don’t worry; it won’t be the last community event we do, and 2013 will have many more programs that allow you to share your voice. We were proud to see so many people responding, and over the course of the month, we nearly doubled our amount of members, something which we all found staggering. Thank you so much for your support. For those of you who’ve just joined the fight for a Practical Cure, welcome aboard. For members who’ve been here a while, rest assured, we have some big things coming in early 2013.
This has been a hectic race to the finish. We’ll be unveiling our new website at the end of the month, in addition to a few new ways to help push for a Practical Cure. We’re ready to put 2012 to bed and start gearing up for a lot of the big things we’re planning for 2013. We will be absent next week, but will come back just before New Year’s to talk about some of our resolutions in the month’s ahead, and hopefully, hear some of yours.
In the meantime, celebrate the season, stay close to your loved ones, and enjoy a little time off.
Until Next Time
The other day I was at my friend Kagen’s house and my pump stopped working.
A few minutes after I bolused for lunch I saw a wet spot under my shirt, smelled it, and realized I was leaking insulin. (Sidenote: Is it me, or is insulin the most distinct smell in the world? Nothing else smells like it.) It wasn’t a huge deal–I generally have a replacement set on me at all times, so I went into the bathroom and changed. When I was done, I threw the needle into the toilet.
“What are you doing?” Kagen asked me. “Some fish is gonna get that caught in their throat.”
I shrugged. ” Do you have a sharps container?”
She shook her head no.
“A used coffee can or something?”
She shook her head again.
“Down she goes.” I flushed.
We went on eating lunch, but I spent time thinking about that for a while afterwords. At my apartment I have a sharps container, but anywhere else my needles get flushed down the toilet. Before that moment, I never took the time to think if there could be a problem in doing that. The needle has to wind up somewhere, right? Where? And how many other PWD’s do the same thing?
I talked about the cost of diabetes on this blog before–the turmoil this disease can reek on your health, and the billions of dollars that go into a bloated system of medication and treatment. But I’ve never thought of the possible environmental impact of the disease. Consider all the needles, test strips, lancets you can go through on a daily basis. If you’re a pump user, the infusion sets that you go through every three days. I refill my insulin cartrage using a plastic, disposable device every three days. Diabetics go through a tremendous amount of plastics each year in keeping up with their disease, and on top of that the needles we rely on for treatment are incredibly hard to get disposed of any way else. In 10 years, I’ve probably sent hundreds of needles down the toilet, and it’s foolish to believe that they won’t wind up anywhere harmful.
There haven’t been many studies done on the environmental cost of living with diabetes, but when you consider the amount of materials that go into the upkeep of millions of people, I imagine the numbers would be staggering.
The fallout of diabetes is mult-faceted and difficult to comprehend, both in health, money, and our effect on the world around us. More treatments are not the answer, and placing on our hope on the possiblity of an ideal cure that could take another century to create is also useless. The answer is a Practical Cure.
Until Next Time
Two weeks ago we published STATE OF THE CURE, a report that analyzes the progress made toward a Practical Cure in 2012. It has many interesting findings, and we encourage you to take the time to read it and become informed of what is going on in the diabetes charitable universe. However, we’ve received one overwhelming question from all the people who read the report.
What can I do to help?
Though there was a brief section towards the end of the report on how you could help bring about a Practical Cure, the sheer amount of response caused us to put together our new report, “WHAT CAN DONORS DO?”. This report is a short follow-up with more information on how you can take action in pushing for a Practical Cure. Importantly, the most effective thing you can do is also the simplest.
Stipulate Your Donation.
If you tell the charity where you want your money to go, they have to abide your wishes. To those of you who want to see a Practical Cure and have been giving to these charities, just attach our Stipulation Letter to to your donation ( one is included at the end of the WHAT CAN DONORS DO? report). It’s that easy, but every little bit helps. If all of our members stipulated 25 dollars towards a Practical Cure it’d be nearly 75,000 dollars, and we’re growing everyday. Every little bit counts, and moves us that much closer to the end goal.
If you stipulate, make sure you let us know. With a new website soon releasing, we’ll be creating ways to make this process even easier. We’ll also shortly have more options for how you can push to a Practical Cure apart from stipulating.
It’s time for things to change. We want a Practical Cure, and so do you. Now let’s do what it takes to achieve one.
Until Next Time
P.S.: We just released our newest survey on Donation Priorities. Please take it if you get the chance.
Last Monday, the JDCA released the biggest report since its inception entitled STATE OF THE CURE. If you haven’t read it yet, I encourage you to do so, as it discusses progress made to a cure in 2012, and the various obstacles that are standing in the way of the results we desire.
Put simply, the situation is not good. Currently only 3 cents of every research dollar goes towards a Practical Cure, limiting the amount of funding projects can obtain, and therefore cutting down on the amount of promising research in human clinical trials. We all want a cure. And in order to make one happen as soon as possible, funding for Practical Cure projects needs to be increased. In our “What Can Donors Do?” section, we discuss several easy ways you can help change this trend. If you haven’t read it, please follow the above link and take the time to look it over. If you or someone you love has diabetes, you owe it to yourself and them to be aware of what’s happening.
If you have read the report, we’d love to hear your opinion on it. What surprised you? What would you like to know more about? This will be a yearly report, and your input would not only be appreciated in shaping next year’s edition, but also in giving us an idea of the topics and issues you find most important for our publications year-round. If you have any comments, please leave them below, on our facebook page, or send them to email@example.com. Lastly, don’t forget to pass this report around to your friends. Only by people being aware of the challenges to a cure can we collectively work together to overcome them.
Until Next Time