Diabetes Fund raising can be a touchy subject... many of us have dug deep into our pockets for years on blind faith that our hard earned money was going towards a CURE but that said, the sad side to this story is most of the money today is being spent to find ways to grow the "Support industry". Dr.Faustman was a hero when her story was first blown out of proportion by the news agency's that she had found a CURE she took millions of dollars to test a drug on three humansto see if it would produce TNF and has looked for some bio markers in a thousand + blood samples that PWD's supplied including personal travel expenses to deliver the sample....."Millions of Dollar's"
The study was just to try and find a drug that would cause the body to produce TNF. This is a quot from one of her interviews..... “Please make sure they don’t think we’re curing type 1,” Here is another statement from the same interview... “It’s not like anyone is throwing away their insulin syringes,” says Faustman. The elevation of C-peptide was small, and it did not last long. She is saying she may have found a way to increase C-peptide and maybe develop a booster that could be used to improve insulin production....again it's far from a CURE.
Her study was called....“Proof-of-Concept, Randomized, Controlled Clinical Trial of Bacillus-Calmette-Guerin for Treatment of Long-Term Type 1 Diabetes.”....Now how did the News Channel's determine this was a CURE for Type1 Diabetes???
Jethro your starting it again explain why a million of us PWD's should give twelve dollars to Dr. Faustmans research ....I will gladly pay much more than 12 dollars for a "CURE" so no one else has to live with D.....but I do not need one more marginal supplemental drug to add to my insulin therapy.....It's ether a CURE for me or Insulin there is no ground in between.
If you can start a new .org that will help PWD's with insulin expense, help them find a job, a place to live, give them a donated car so they can get to work, help them with school, just about anything but spending money to develop new products for our industry's money grubbers, they have investment bankers to fund them along with our continuous need for the products.....
seeing various charitable organizations campaigning for a cure.
I don't mean to be a downer or rain on anyone's parade
but I have been promised a "cure in 5 years" many many times in the past 30 years
If I had believed those who told me that
(on the day I was diagnosed!)
I might not have put so much effort into living
(surviving!)
with the disease.
I have nothing against the JDRF or other organizations
But living with the disease is what most of us are focusing on here
and is why we come here to hang out
Not eradicating the disease
Additionally those who come here and tell us "you can eradicate this disease if only you are good of heart and make just a little bit of an effort" remind me just a little too much of those who have told me over the past decades that if I just tried and put in a little work, I could cure myself. They either imply or state that having lived with the disease for 30 years, I'm obviously lazy and not even trying. I know, the intentions are always good. But many of us have learned to simply put on a smile and nod when told this. There is very little point in trying to argue or educate most of those folks. Of course "those folks" think I'm the one who should be educated. They think everything is an after-school special where the problem is resolved before the end of the episode.
JohnG; I can relate to your disapointment in this area.
Aprox 17 yrs ago I saw a quick story on the news about a scientist that was coating beta cells with algae from seaweed, that coating allowed the beta cells to interact and produce insulin while preventing the T-cells from destroying them. That story was shown on one station one time. Granted it was not like they cured diabetes in one day but at least someone was trying and yet I never saw anything else about it in the media.
We all lose faith when research is done and fades away leaving us with little to show for it but we can't allow our hope to be blinded by past disapointments.
Make a phone call to your local news station on November 13rh and if your hope is too damaged to do anything else then leave it at that. Any legitimate research to cure this disease should receive a lot of airtime.
Happiness and hope walk hand in hand.
I've watched the inteviews and the videos posted on www.faustmanlab.org , some of it was clear and inspiring while other aspects were vague. I think the concept of using a generic vaccine to boost TNF and rid the body of the bad T-cells is hugely promising. Phase two is supposed to figure out the required levels and frequency of BCG injections. If I had to take one injection per month to allow my pancreas to do it's job that would be way better than what I'm dealing with now. If you have a better idea then go to school, get a degree and become a research biologest. I considered that when I was 22 and decided against it because the earning potential was too low, who knows my passion may have led to a cure if I had taken action then. I believe that if someone else has the passion and the education to research for a cure the least I can do is ask my local news to give it some airtime.
Tim; I too have had this disease for 30 yrs. When I was diagnosed I took a couple classes that scared the crap out of me and I used that fear as inspiration to take better care of myself.
I live in SW washington which is considered the great north west of the united states. When I was a kid we did the walk-a-thons but over the years I have wondered where that money went because in the region where I live there isn't anyone talking about curing this disease. All I ever see on the tv about diabetes are stupid commercials / advertisements for products promising "you'll never have to poke your fingers again.........."
So if you've seen a lot of media coverage about a cure in your area then lucky you.
But if that coverage has somehow darkened your spirits then I advise you to be cautious, because a life without hope is a depressing path to walk and it won't bring you any happiness. Depression rarely leads to anything positive.
