Sara’s Research Retreat

My friend Sara guest blogged here back in August.  She is part of JDRF’s T1D Voices Council and also my dear friend.  Last week, she sent me an email about my blogging break, and attached a speech she wrote to present to the Board at her Tucson JDRF Chapter.  She thought her presentation might work for a guest blog post and I’m thrilled she wants to guest blog yet again.  So here it is and thanks Sara.
How Far Has Research Come, and Where Else Can it Go?
allenmonograph“First, a little history lesson, if you will indulge me. Diabetes has been around a LONG time, first notated by Hippocrates, and on through the ages. A brief history of the disease is included in this monograph published in 1918.  At different times, the ailment was thought to be a problem with the kidneys or the liver, or the blood, or the psyche. Proper diagnosis of diabetes became possible in the 1600s when Thomas Willis noted that the “urine is wonderfully sweet, as if imbued with honey or sugar,” as if he was describing a fine wine!  The doctors and scientists were determined to find out what caused the fatal dis-function of the body, and endeavored to find better, more effective ways to treat it.  
In the late 1700s, one treatment called for confinement to the house, preferably to one room, with the utmost possible quiet and avoidance of exercise. THAT I could live with. The diet however, called for milk and lime water, bread and butter, blood pudding, game and other rancid OLD meats and lots of fat. The skin was to be greased daily with hog’s lard, and flannel [GAH] was to be worn.  Another called for the drinking of melted beef fat mixed with hot oil, and regular bleedings….In the mid 1800s, they threw out the rancid meat treatments in exchange for alcohol, (which works for me). Milk was forbidden, careful mastication was encouraged, and finally bleeding and opium treatments were condemned. About 150 years ago, improved techniques of research determined that it was the pancreas that was the offending organ, and with not-yet-invented-laser-like focus they began to study it, often in tandem with more and more rigid dietary restrictions. in 1911, a Dr. Hodgson advocated eating a raw egg with a few ounces of olive oil several times a day, and that’s it.  
All that to say, thank GOD, I was diagnosed in April of 1974, when I could treat my diabetes with THIS insulinsyringeThough i must say this 30 unit syringe with its super fine needle is a lot more palatable than the 100 unit syringe with the pool cue sized needle I first used. 
But had I been diagnosed a mere 60 years earlier in 1914, my parents would have been told that I had an almost 100% fatal disease, Like my great aunt Gigi, who was diagnosed in 1918, I may not have lived long enough to see the next christmas.  If the high sugars didn’t do me in, i most likely would have died of starvation. For, as the monograph outlines in great detail, until 1922 and the discovery of insulin, the only way to stave off death was literally to starve the patient.  As Dr. Allen wrote, “Expectations of an actual cure, in the sense of a restoration of the normal power of food assimilation will be disappointed under any dietetic treatment, and the need of some more potent therapy than diet is a keen stimulus to research.”
I think you get the point that research has never stopped on this disease. And that brings me to the point of this talk. I just got back from the annual Research Retreat held by the JDRF in New York, and never has Research been more important AND more productive. The first part of the meeting was the T1D Voices Council of which I am a member, along with 15 other voices from around the world, other T1Ds, medical professionals including our own Dr. Insel’s brother, several parents and even a grandmother. We reviewed some of the budget considerations of JDRF, and without going into the specific details and the way the funding is split up into different buckets, I can assure you that it DOES go to research that will lead to a Cure. We also discussed some issues JDRF faces with clinical trials and what the role of the individual is in terms of developing these. There are several places on line, including the JDRF web site, Medivizor and the National Institute of Health where you can go to enroll and be alerted when a trial comes up in your area…though there are not that many in Tucson. 
Lastly, we thought it would be a GREAT idea if JDRF took the opportunity of the 100 year anniversary of insulin in 2022, to develop  some clever, exciting marketing campaign. We felt it would great awareness and advocacy tool and hopefully, they can really put some effort into it.
It was then on the Research retreat where we got to sit in on the talks given by various researchers, the most interesting to me was that of Viacyte, a bio tech company in San Diego. We head from their lead researcher about this credit card sized thingie that will be implanted in the back and will ultimately offer 24 months of diabetes-free living. While JDRF is waiting for the clinical trials to go forward (Phase I and II begin next year, by the way), they are working with another company to develop the capsule materials. The encapsulated islet cells die without insulin so this other company has developed this material that is actually being incorporated into the body  – I wish I had that slide, but you could SEE blood vessels growing in and around it…bringing blood to the islet cells
And it is partnerships like this that were the focus of another talk by Pure Tech – this is basically a Venture Capital Firm that, in partnership with JDRF have created T1D Innovations which “will accelerate the development of innovative T1D therapies and enhance our ability of turning Type One into Type None.  Basically, T1D Innovations will create and fund companies to translate discoveries into products, helping them cross the well-known biomedical “valley of death” – which is the notorious gap that often prevents promising biomedical discoveries from being developed and reaching patients.  T1D Innovations will develop new companies around promising scientific research, providing the infrastructure and resources that are necessary to advance the research to/and through clinical development  and finally to the T1D community. 
We also heard from a guy at Pfizer who talked about another collaboration between Pharma, academic science and JDRF. The upshot of that was that if, after all the study and research, Pfizer doesn’t want to invest to bring it to market,  it reverts back to JDRF’s or the academic instuitutions control to find another way to bring it to the market, so some big pharmaceutical company is not going to discover our cure and then decide it isn’t WORTH the investment!
There is considerable research being done on restoring and rejuvenating islet cells which may someday lead to a vaccine that everyone gets, like the measles or polio vaccine. This would prevent the body from developing the disease in the first place, but in the nearer term, that very research will be used hand in hand with the encapsulation research.
Yes, the focus is definitely still on ending this disease. Some of the work being funded on islet and beta cell treatments, antibody treatments, smart insulin and especially the artificial pancreas, all point to exponential Improvements in treatments, eventual reversals and some day, the prevention of the disease world wide. 
The official line from JDRF is that “The path forward from Type One to Type None is a continuum of therapies that leads to a cure. As our research programs and therapies move through the pipeline, new treatments will progressively remove the daily burden, side effects, and complications.”
German Pathologist, Bernhard Naunyn, said, “the therapy of diabetes has been well founded by painstaking labor, highly fruitful in all directions; we may be proud of that which has been achieved and yielded here…….”  he wrote that in 1906, and I think it is still true.
We WILL turn Type One into Type None and on my and Errin and Brody and Aidan and Alecia and Nathanael’s behalf, not to mention everyone else, thank you for your support and belief in this organization!
alecia for blog

Guest Post – Sara at The Voices Council

Today I have a something/someone special to share.  It’s a guest post from my friend Sara who was one of the first people I met and felt I could really talk to when I made the switch from MDI to an insulin pump in 2000 (we also happened to have the same doctors).  I can’t possibly explain how fortunate I felt to have her as a friend then and all these years later, for her friendship now (hey, when she got her Dexcom she was willing to to bedazzle it).  Sara’s friendship has been a true resource for me and made me realize how important it is to have peer support.  She moved to AZ many years ago, but I usually get to see her twice a year when she’s in NYC on work trips.  She is a friend I probably never would have met if it weren’t for T1D.  So yes diabetes, I will give you 1 point for that one.  Here’s her post  (Also that is a pic of us below, post pumpkin pancakes.  Clearly pumpkin pancakes are exhausting hence the squinty eyes):


Annual/Bi-annual NYC brunch (pumpkin pancakes)
Hi, my name is Sara and I have had type 1 diabetes since I was a little kid and for the last 39 years, 3 months, 16 days and….6 hours,  I have been waiting….eagerly, sometimes not so patiently, but always hopefully, for my cure. For the day when I can travel without getting groped by the TSA, and when I can eat, without doing MATH.   For the day I stop poking holes in my body and I stop worrying about needing dialysis or going blind or wondering if my brothers kids will get this cruddy disease.


I had the honor of being selected to participate in the first JDRF T1D Voices Council. These 16 people are meant to reflect the needs of people with type one diabetes.  Most of the Council members have T1D, but there are a couple of family members. Most of us are normal people, but some are medical professionals. We are mostly American, but we have some Europeans who bring their unique perspective to the group. We range in age from a college freshman to a grandparent, but what links us is our commitment to finding a cure for Type One diabetes, and our vested interest in JDRF.  We are all active with our local chapters, whether as participants in the Annual Walk, and some of us are on our local Board of Directors. We don’t make any funding decisions; we are simply here to speak as the voice of our peers, to make sure our concerns (and I mean the universal “our,” not just our 16 voices) are being addressed, and to offer some perspective from the front, as it were.  We have been assured that our opinions are highly valued by the organization, including CEO Jeffrey Brewer and the International Board of Directors.


Our first meeting was held last December in conjunction with the research meeting. We all met for the first time in person (we had set up a Facebook page and were stalking each other madly), along with with our leaders, Bill Parsons, from the International Board of Directors and father of a T1D son, and Dr. Richard Insel, JDRF’s chief scientific officer.  Our discussion focus was “complications”and specifically, which complications, if any, should JDRF be concerned with in terms of research.  As you can imagine, our opinions were fiercely personal; colored by our experiences. For me, the focus should be on eyes, absolutely. Others were more concerned with nighttime lows (the parents in the group seemed to speak loudest on this, less of a concern for me, thanks to my CGM), but we discussed and ranked them. The discussion at times was heated, to say the least, and a couple of us were unable to “rank” which complications were more deserving of funding than others.  By the end, however, I think our consensus was that we wanted JDRF to stay focused on a cure and improving our lives, and leave the research on complications to other organizations.  One complication the T1D VC discussed, which wasn’t on the original list, were the psychological aspects of living with this disease, which I think came as a bit of a surprise to the powers that be.


Two weeks ago, the T1DVC attended the annual conference in Washington DC, and we were forewarned that our topic was going to be the Psycho-Social aspects of T1D, which arose partially from a recent study on these issues, and our timely discussion back in December. However, let me start by saying for the first time in 39-odd years, I finally really felt some HOPE….sure, we all say we are full of HOPE every year when we try to raise money for the Walk…my donors need to hear that I haven’t given up on JDRF. Frankly, that “just around the corner” nonsense has been playing rather thin.  But now, oh, NOW!  I am so full of ever-lovin’, say Hallelujah, pass the hat HOPE, I can’t stop bouncing, dare I admit to smiling, (and then crying) every time I talk about it.


Little Sara

Little Sara

Not much has changed since the research meeting in terms of what JDRF is pushing through the pipeline (as they like to phrase it), but what HAS changed is the marketing and presentation of this research. For eons, I have had issue with the way JDRF marketed us! I was just sick of the ads full of cute children surrounding Mary Tyler Moore, as she begged for a cure. Don’t get me wrong, I LOVE Mary Tyler Moore, but she is not of this generation, and while Nick Jonas and Halle Berry ARE, we can’t seem to get them to speak out as loudly as, say Christina Applegate and Sheryl Crow do for breast cancer.


Anyway, enough whiny rant. The point is, if you haven’t seen the new marketing campaign,  stop reading now and go watch the BELIEVE video (which got a standing ovation and reduced me to tears) and the VISION video (which also got thunderous applause and reduced me to tears), and then watch the research videos on Encapsulated Beta Cells and the Artificial Pancreas Project and Smart Insulin and the WALK video or watch the Plan for the Future one. If you aren’t moved by these, then you probably aren’t really T1D!


So then we had our T1DVC discussion on the psycho-social aspects of diabetes, and we each defined our vision of a “cure.” Some of us are pretty strict and a cure means, “life as it was BEFORE diabetes,” while others are a little more lenient, and would accept a STEP towards a cure, such as encapsulated beta cells, or even an artifical pancreas system that integrated insulin, symlin AND glucagon. Most of agreed we didn’t want to trade T1D for anti rejection drugs and a pancreas transplant.


What I am MOST excited about is those Encapsulated Beta Cells.   I won’t go into all the technology behind it cuz you can google Viacyte and read one company’s plan for yourself, but I SAW it. Jeffrey Brewer stood up there and held up a prototype of this amazing device in his hand. It looks like a tea bag, but this packet will allow us to live completely boring lives, for up to 24 months…which, as Jeff said, isn’t exactly a CURE, but it IS a darn good thing. And it will be in clinical trials next year!


And don’t you think, for one SECOND, that just because they are working on all these technological advances, they’ve forgotten about a CURE.  The Voices Council cornered Dr. Insel at breakfast and grilled him on research updates that our own doctors don’t know about. His eyes gleamed as he talked about the things that are coming down the pike…the potential for a vaccine, and regenerating damaged beta cells, and gene therapy. It is all THERE….and we just can’t lose hope!


And basically, it’s that hope that gets us out of bed every morning. It’s why we ask our friends and families to donate to the walk, isn’t it?  We all still hope for our cure and we need JDRF to continue this research until we have a world without Type One Diabetes.  JDRF is now making it clear that they are no longer a mom and pop organization, but a world leader committed to removing T1D from this earth and until then, it is their mission  to lessen our burden, lessen our struggle, lessen our pain and fear, and lessen that of our loved ones.

And they won’t stop,  until they turn Type One into Type None

So, now go sign up to be a part of Alecia’s Stem Cells, or come be part of my Team Type None in Tucson, and let’s NOT give up our hope!