Saturday, September 5, 2015

Funding a Cure

I have thought long and hard about this post and if I should put my opinions regarding this matter on "paper".

Recently there have been numerous posts bashing JDRF and their funding of a "CURE". While every one is certainly entitled to their own opinion, I also feel that just because people don't do their research before investing in the not for profit of their cause is also at fault.

Everyone knows that I want a cure as badly as the next person. I want to see my son once again live free of the T1D burden and to get that piece of care free childhood back! Hey, I want to be free as well! I want to be free of the stress, worry, sleepless nights, hovering, and making sure that my child stays alive EVERY SINGLE DAY. However, I am also beyond GRATEFUL for the technologies that we have today. Technologies that are funded with our fundraising dollars. Technologies that are helping me save my son's life and potentially prevent serious complications. Do you know what people 20, 30, 50 years ago would have done to have our technologies? Do you know how many lives they would have saved and are currently saving daily?

We are extremely involved in JDRF. I know exactly where my money goes and I have personally met the executives of the organization. The current CEO has a son with T1D. I got to hear that son speak this year at Children's Congress. Do you think that he doesn't want a cure for his son? The previous CEO also had a child with T1D and that CEO didn't even take a salary while employed by JDRF. Do you think that he doesn't want a cure for his son? The Chief Mission Officer & Vice President of Research has T1D as well as his brother and numerous family members. Do you think that he doesn't want a cure?
I could continue this on and on down the line but the point is this.......the people at the top are living the same life and having the same struggles as we are, and they want the same end goal!

So here's my opinion about where my funding is going and how I feel about a real biological cure. Research for a cure has been happening since insulin was discovered 94 years ago! 94 years! Can you imagine how many people would have died in 94 years had there have been no technological advances in the management of this disease? Does every dollar you raise go directly to cure research? NO, and quite frankly I don't want it to be. I don't want to see all of my money go into a cure that might not ever happen, because FDA controls that fate. FDA controls how long and how many clinical trials it takes to approve treatments and medications.
What if that takes another 94 years? Don't you think that advancing treatments is a vital part of keeping your child alive and as healthy as possible to get that cure when it does come? Don't you think that investing in a prevention is important so we can STOP this disease in it's tracks?

JDRF is a vital investor to MANY scientists and companies. They do not and will not put all of our eggs in one basket and for that I am grateful. I don't want to be all in on one scientist and one treatment because what if it doesn't work? I want advancements in technology, insulin, prevention and I want ENCAPSULATION! That's right, to me and for my son that is as good as a biological cure in my opinion. This will restore his ability to produce his own insulin and live diabetes free for a few years until it has to be replaced. That is where some of your fundraising is going and that is already in human trials! This is the optimal option until a biological cure is found.

If you'd like to sit around and bash technology then I urge you to give it up. Take your child off of their insulin pump, continuous glucose monitor, take away their glucose meter that needs a tiny drop of blood and go old school and see how you like it. Use vials, syringes and check your child's glucose levels with ketone strips. See how well your child thrives without technology! You don't have to bash one organization to support your own beliefs. If you choose to invest all of your money into one lab and one method of a cure then that is your right. However, when you choose to bash an organization that is fighting for Type 1 Diabetes as a whole and hedging our bets in multiple labs, companies, treatments, prevention etc. then that just shows your ignorance and agenda. For those of us who are educated with the facts already know where our money goes, and those of us who embrace technology while we are waiting know that every new release is backed by JDRF. Coincidence? I think NOT!

If you don't do any fundraising at all, then I don't feel that you get an opinion. You are doing nothing to help us take T1D anywhere! Fundraising doesn't cost you anything to do!

I have heard people say that JDRF is just out to make money and what will happen to JDRF when there is a cure....well did you know that the March of Dimes used to be an organization called the National Foundation for Infantile Paralysis that fought to cure POLIO! Once a cure by vaccination was found they adopted a new name and mission to support, and guess what......they are still around today!

I am not here to push my beliefs on to you. I am just urging everyone to look into the organization where you choose to invest your fundraising dollars and make your own choices. They all provide detailed reports on exactly where your money is going. I will say; don't think just because you invest in one lab that is working on a cure that all of your money will be going to a that cure because that lab will also be working on a lot of other things, so be very cautious of that when you are looking and doing your research!

If you do support JDRF then here are the actual facts of where your money is going and what avenues they are investing in

We are all here for the same goal!!!!!

-until next time