Which cause(s) do you think are the best ones out there to find a cure for diabetes?
-Type 1
-Type 2
I do have one huge cause for NOT to find a Diabetes cure :
M-O-N-E-Y
This question may open a can of worms between those with type 1 and those with type 2. I hope not.
Type 2 clearly impacts a lot more people than Type 1 does. It will become even more expensive for somebody (gov’t, insurance, individuals). Finding a biologic means to reduce the insulin resistance in Type 2 would save all parties a ton or two of money. Increasing costs may force drastic change by some entity (Medicare & Private Insurance) soon. It might almost make sense if those entities were to fund research.
I donate to the JDRF and the ADA, split 90/10. I have Type 1, so most of it (money & time) goes to the JDRF.
I do fundraising year round for JDRF.
NOT the ADA. That’s for sure.
Funded mostly by Big Pharma and junk food companies, the ADA has campaigned tirelessly to keep people with Type 2 diabetes chugging high carb diets which they then must compensate for by taking every expensive drugs. This, despite years of research showing the safety and efficacy of lowering carbs in the control of Type 2 diabetes.
To me, their refusal to change this position borders on malfeasance. They are still advising patients with Type 2 that a PP target of 180 mg/dl (10 mmol/L) is “tight control” which is insane for Type 2s controlled by diet and oral meds.
They have also campaigned tirelessly to prevent people from being diagnosed with Type 2 until years after they have started developing diabetes because it isn’t “Cost effective” to provide the right testing–the OGTT.
They publish a couple good journals, which is the only positive thing I can say about them. Their record on setting the guideliness for care for Type 2s is criminal. And they are the ones that doctors and insurers look to for practice standards.
For me, it’s the JDRF, I’m doing my first walk for them this October. Some of my family immediately donated large sums to them as soon as they heard about Tony’s hospitalization which warmed my heart. They also have done walks long before he was even born.
I wanted to put a few more names out there to gauge your experience with these organizations:
-The Iacocca Foundation - http://www.iacoccafoundation.org/
-Diabetes Research Institute and Foundation - http://www.diabetesresearch.org
-Taking Control of Your Diabetes - http://www.tcoyd.org/
Do you guys know of more research initiatives worth supporting worldwide?
Pablo, you hit the nail on the head. Economically, I don’t know what kind of shape we’d be in if we started curing diseases. There is no reason to, we already have effective treatments.
The cure for every disease is inside each of us. That’s why I promote everyone to begin a path of education and self healing, it’s the only answer right now.
I’ve also given money to the Iacocca Foundation and the as yet unmentioned Joslin Diabetes Center in Boston.
The other two you name, Manny, I’m not yet familar with, but will take a look at their websites.
We do most through JDRF because they’ve been there for us since diagnosis.
We also donate to Sick Kids Hospital / University of Toronto.
We have been active in support and fundraising for JDRF (www.jdrf.org) by participating in the annual walkathons (our family team raised $20,000 last year alone) and their annual Galas. I would recommend anyone interested in diabetes research take a look at their website for a local chapter and just to see what all they support. More than 80 cents of every dollar raised goes straight to research because so much of their activities are supported by the parents and corporate partners who believe in their cause.
Our family has supported the Diabetes Research Institute (www.diabetesresearch.org) for many years and we continue to do so. We prefer to send our money directly to the research we feel is most promising rather than sending it to a big organization who then decides where to fund research they feel is promising. If you’re ever in Miami, you can arrange to tour the facility. I love their collaborative approach - the researchers work with others worldwide on the same goal.
I am also encouraged about LCT (http://www.lctglobal.com/media-lct.php) and their research with encapsulation of porcine Islets. The Children with Diabetes Foundation http://www.cwdfoundation.org/ recently helped fund LCT.
I volunteer for and tend to give to JDRF as well because its focus is on Type 1 diabetes. But it’s great to learn about some other organizations to look into. The Diabetes Teaching Center at UCSF is another great cause, although that would probably be more for people in the San Francisco area.
JDRF. I’ve been to a couple of TCOYD workshops since I am here in San Diego and they are very good at supporting the community, but I’ve never given them money except a nominal donation to attend a workshop. I want a cure, so I raise money for JDRF.
I don’t get Next Dimensions comment about there being no need to start curing diseases because we already have effective treatments. That the cure for every disease is inside each of us and we can cure ourselves??? Huh? Did I just totally miss the boat on that? Insulin is not a cure and frankly I don’t think it’s that effective of a treatment. It’s life support. How do you jump start a pancreas that’s quit working?
Can someone explain? Or should I just ignore that comment?
I feel that you are being a little harsh on the ADA. Actually, this is what the ADA suggests on their website: "Good control means getting as close to a normal (nondiabetic) blood glucose level as you safely can. Ideally, this means levels between 90 and 130 mg/dl before meals, and less than 180 two hours after starting a meal, with a glycated hemoglobin level less than 7 percent. The target number for glycated hemoglobin will vary depending on the type of test your doctor’s laboratory uses.
In real life, you should set your goals with your doctor. Keeping a normal level all the time is not practical. And it’s not needed to get results. Every bit you lower your blood glucose level helps to prevent complications."
here’s a link to the page with the info: http://www.diabetes.org/type-2-diabetes/tight-control.jsp
I have been a volunteer for the ADA for 4 years now (and when I say volunteer, I mean it’s a second non-paying fulltime job for me). I have had Type 1 for over 22 years now and I fully support the ADA in everything. Our local ADA office has supported a new support group (mostly type 2’s), education (99% for type 2’s and prediabetes and how to delay the onset of diabetes) and diabetic screenings in the community. I am sorry that you feel the way you do about the ADA as the organization does many wonderful things for people living with diabetes, both types 1 & 2, every day. There are several cases where the ADA has fought for people living with diabetes (ex. rights for a diabetic child at his school system here in GA, rights for people to be hired as truckdrivers, police officers, etc.). The ADA has lawyers that volunteer to fight for diabetics’s rights.
There are all kinds of wonderful organizations out there to help us all - JDRF, Joslin, IDF, the list goes on. I hope that you have found one that you like and that helps you with your diabetes.
I hold a walk every year to raise money for The Iacocca Foundation. (My next walk will be on October 6)
Just a little info about them. The IF was founded by Lee Iacocca whose wife died from complications of Type 1 diabetes. Before her death, he promised her he would find a cure in his lifetime. And, that is what he is trying to do.
The IF donates to several research projects throughout the country. ALL of this research is geared to curing, not treating, Type 1 diabetes. The IF does not fund research to make better tools to manage D, just to research that is trying to cure this disease.
The IF is the main supporter of the awesome research being done by Dr. Denise Faustman. She has cured Type 1 in mice and will be starting clinical trials soon to try and do the same for humans. If you haven’t read about her research before click here.
At the annual Chicago JDRF gala, the president of the Illinois chapter says in the welcome address: “Tonight we are celebrating 26 years of the JDRF.” I almost choked on my food. I called her the next day and said being T1 for my entire life has not been a celebration for me. Sure seems like they are interested in preserving their jobs and the status quo, doesn’t it?
I don’t think the JDRF should be celebrating their utter lack of accomplishment. My money goes to joinleenow.
It is frustrating since it doesn’t go anyway when childhood ends. However, the JDF (now JDRF) was started by a group of parents with kids having type 1. The money raised helps all of us. As an adult, I am better able to care for myself (including diabetes) than I was as a child. At age 52, I would not be a good poster boy in fund-raising efforts.
I wanted to mention a new foundation called Hanuman Medical Foundation. http://www.hanumanmedicalfoundation.org/ The project that we are funding is the Solving Diabetes Project ( http://www.solvingdiabetes.org/ ) which is research into macro-encapsulation of islets that would provide stable blood glucose levels without the use of immunosuppressant drugs or injected insulin. It is a collaboration between Dr. Lakey the co-inventor of the Edmonton Protocol and Cerco Medical.
I’ve given to the DRI in Miami many times, JDRF(once), Iaccoca/Faustman (a few times), The Springpoint Project (Once) and bought stock in Microislet and Transition Therapeutics. In the long term my hope is that Faustman will come through. In the shorter term my hopes are for Smartinsulin or Exsulin. Right now I will continue to support the Faustman Labs and would clearly support Smartcells/Exsulin if they were public but they are not. Though Living cell technologies is having some sucess with their encapsulated pig transplant I just don’t see that being the standard future treatment for diabetes. First off the transplant is way too expensive and secondly it will be tough for them to get FDA approval. If nothing is available for us by 2015 I think at least one will be close or we will at least have a better idea of where any of these therapy’s are going.