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Ok, now that THAT is out of the way, let me give some back ground before I get to my question.
When The Superhero was diagnosed with T1 in July 2008, it was a few months before the local JDRF walk. It was also only a few months before The Princess was due to be born. Since the timing of the walk and the timing of The Princess coincided, we did not participate in the walk. Not to mention being SUPER overwhelmed by being newly diagnosed with a T1 Diabetic toddler.
Fast forward one year, local walk 2009. I signed us up to walk. We raised some money. THEN The Superhero got SICK. We were admitted to the hospital the day before the walk. We missed the walk.
Now, fast forward to THIS year, 2010. Our walk is a few months away. I did sign us up a few months ago because I got the email. I have now been thinking a lot about this and whether or not I really want to walk.
Not because I don't want a cure, because OF COURSE I DO.
BUT how do I know if I am funding the right research? Is JDRF really where I want my money to go? Have I done enough research of my own to feel I am making the right decision for US, and not just doing it because that is what everyone else does?
Today a lot of local families are attending the walk kick off gatherings. I thought about going, and honestly might have, if it weren't at a WATER PARK. This is not my idea of a good time with 2 toddlers, one with T1 Diabetes. So I opted not to go. And this has gotten me thinking more and more about whether or not I even have it in me to raise the money and do the walk if my heart is not fully in IT.
I have been doing a little research into JDRF and into other T1 Diabetes Researchers, namely, Dr. Denise Faustman. She has done some amazing research and is currently conducting Phase II HUMAN clinical trials! THIS has me SO excited that a CURE could be as soon as 10 years out!
BUT, she is PRIVATELY funded. JDRF does not support her research. I have heard her research is controversial. I have heard her possible "cure" would not be a money maker since it would potentially be CHEAP for people/insurance companies, therefore the BIG pharmaceutical companies won't fund her.
SO, how do I know I should be sending my financial support to her? What if she DOES find this cure? It would be so exciting to know I was a part of THAT.
Now don't get me wrong, I love JDRF. They have been a great resource for family support, etc. I appreciate what they are doing too, but I REALLY want a CURE for my baby. And I am not sure they will be the ones helping to find it.
I mean, since we don't really know what this cure will be, we have no idea who will find it, or who will have funded it.
So that brings me to my question for YOU...
Do you support JDRF, Faustman, or both in some way? And WHY?
I honestly want to know what YOU think. Even if you have NEVER posted on my blog, I am genuinely interested in everything everyone has to say regarding Diabetes Research and the support that goes along with it.
And, we are signed up for the local walk. Now I just have to decide if I REALLY want to participate.
11 comments:
My life is too chaotic to really invest time into anything right now. Plus, I'm not really emotionally ready to participate in any walks.
However, my inclination would be to donate to Faustman, based on the little I know about her. I've heard pretty much what you mentioned about her, and I think her research sounds promising.
Tracy - how interesting... I too, have a blog post coming soon on this subject. Not so much on which cause to fund, but more on how I am feeling right now (OVERWHELMED!!!) and whether I have it in me in the next couple of months to do the fundraising necessary to help support ANY cause.
What I didnt know, and I thank you for bringing to light, is that Dr Faustman is privately funded, and that her funding is so limited. I have said for quite some time that I think a cure will taken longer than necessary to become publically available because big pharmaseutical companies will be loosing BIG BUCKS when there is no longer a need for their products.
Definitely something to think about on this Saturday afternoon!! =)
Among many other things, people with T1 Diabetes would not have access to CGMs nor would children under the age of 8 have access to insulin pumps without the advocacy efforts of JDRF.
Dr. Faustman's research is exciting to me. I'm downright THRILLED by it!!! But, the truth is that today we're told it COULD be 10 years away. Okay....so that probably means more like 15 - 20, right?
And before I go rushing out to dose Sugar up with her cure, I'm going to need a little more information....like....what are the long term side effects/complications to the treatment? How is a cure measured? Does it mean you have SOME insulin production again....so you're back to something like a honeymoon, still requiring intermittent, unpredictable amounts of insulin? Or does it mean you have complete regeneration of insulin producing cells....and, if that's the case, how do you prevent the auto immune response from triggering all over again? In the event that the auto immune response DOES trigger again, what does that mean as far as long term damage and other complications -- now that everything has been struck by lightening twice, so to speak?
I just don't think the cure we're praying for will be as easy as popping an already FDA approved, low cost pill. I think that, if it really were that easy, we'd all be basking in our cure right now.
So what do I do in the meantime?
Compare today's technology to that of 15 - 20 years ago.
Where is it going to be 15 - 20 years from now?
And, if not for JDRF, will our children even be able to access it?
In the end, I'm most concerned about Sugar's QUALITY of life. I'm not even interested in a "cure" if, one day, we were to find out that it causes a decreased quality of life due to side effects or whatever. (And I'm not saying that would be the case....I'm just saying that it's going to be a VERY long time before enough research is collected to make an accurate determination of the outcome to any cure.)
Who is going to help make my child's QUALITY of life the best it can possibly be, given the current circumstances and treatments available?
That's where I'm putting my energy and resources.
YEP...this has caused me to take pause in my JDRF "fundraising efforts" over the past few years. I still make a team/walk/etc, but also donate to Faustman's Lab...I think her research shows a lot of promise and is on the "fast track" to a cure. I obviously don't hold my breath for it...but I do still have hope. I think JDRF is a good organization as well...like with all things...I think there is a lot of "politics" involved and it is unfortunate that a "cure" or better management of type 1 patients suffer from the "power struggle".
I had a really good opinion going... and then the power went out and I lost it... figures!
This is an interesting question. I think most families with T1 children gravitate towards JDRF because its familiar. Its known. Its safe. I think that JDRF is easier to fund raise for for the same reasons. I feel it would be difficult to ask for donations toward more private research. But does that make JDRF the right choice?? Not necessarily. I think you have to make the choice that's right for you and your beliefs. Such as you do for religion, where you live or how you handle D. Not everyone is going to make the same choice as you. Some will choose the more popular, more comfortable, more known choice. Others will choose on a hunch or a belief.
My opinion is that as long as you are doing ALL YOU CAN DO to help fight this disease... the choice is not wrong. We will have a cure; when God is ready.
Great post - interesting question and I like the way that everyone is playing nice in responses. You never know with these things.
I very much struggle with the same issues as I believe we all do.
Ms. Candy Hearts has great points about the research that JDRF does. Look how far things have come in a relatively short amount of time. I could not agree more with her about funding Nate's quality of life right now. That's what I am more focused on than a "cure".
That being said I am fascinated by Dr. Faustman and her research because she is not only working on a cure for Type 1 but much of her research focuses on curing many autoimmune issues ---- like Crohn's. Double Bonus for the Houston family.
So, we walk, raise money and support the JDRF because it is safe and it is home and I appreciate the work that they do. Although at times when I think too much about it is scares me how closely they are working with Johnson and Johnson & how much money J&J makes from diabetes and how much money they would NOT make if there was a cure.
So, we walk and raise money for JDRF for better quality of life and we make private donations to Dr. Faustman for a the research that she does that may cure my 2 beautiful babies.
We are participating in the JDRF walk. I also think that what Faustman is doing is very interesting. I didn't realize the JDRF didn't support her research, so thank you for bringing that to light.
However, that doesn't stop me from wanting to support the JDRF. They have helped make (and are helping to make more) technology available to give Liam the best quality of life he can have. I have to agree with Wendy that while I would LOVE a cure, I think there is a lot that will come before a cure that can help our kids to live better.For that, I will continue to support the JDRF.
The other part of the walk (and the other events throughout the year) is the sense of camaraderie that we all get to be around other kids and families that know where we are. Liam has met a lot of kids through the JDRF. It also presents a great opportunity for our friends and family to rally around him and show him their support. That means a lot to him.
While at one of our outreach committee meeting the topic of why the JDRF does not support Dr Faustman came up. So the head of our local JDRF spoke to the JDRF head office (Canada)and they stated that they are very interested in her research however they are not able to support her at this time because she can not replicate her findings outside of her study of mice. I have not looked into her studies I have only heard of them but you may want to take a closer look to make sure she was able to replicate her results.
I do think that the more people looking and working for the cure the better and to Dr. Faustman and the JDRF I say keep up the wonderful work and thank you!!
Don't feel pressured to do the JDRF Walk. Your heart has to be in it. Only do it if it feels like the right thing for YOU and your family.
There are so many places toward which we could direct our fundraising and other efforts, like the Joslin Diabetes Center and Diabetes Research Institute in addition to JDRF and the Faustman Lab. Support the organization(s) that make the most sense to you.
I agree with Lora in that I think a lot of people work with JDRF, because it's so well-known. However, it's also an excellent organization. Over 80% of the funds they raise go directly to research. They spend a lot less on administrative costs than many charitable organizations.
Plus, as Wendy noted, their funded research has lead to actual improvements in the lives of those living with type 1.
So, my family will participate in the JDRF Walk. I feel pretty strongly that even if a cure is not in the foreseeable future, new treatments and new technologies that will improve Jack's life are, and JDRF is certainly going to be behind some of them.
I should add that the Walk is an incredible, uplifting event. To see thousands of people out there walking for a cause that directly affects your child is so heart-warming. We've done the Walk twice now. This will be our third year, and while I'm feeling a bit burnt out on the fundraising aspects, I'm looking forward to the actual Walk. It's a great event.
Some years we raise more than others depending on how hectic our lives are at that moment.
Last year each of us raised less than $50, the year before we each raised hundreds.
I just like to do the walk to support our daughter and see others we know and meet even more.
We don't have a local JDRF chapter and the local walk is ADA Step Out, so that's what we particpate in. Our walk helps fund the local diabetes camp that my daughter will go to when she is old enough.
Dr Faustman is AMAZING...we have done fundraising for both her and JDRF....
JDRF is INCREDIBLE ...the support they provide locally for familes is why we walk, and the walk is for Maddison to have her day to shine. We have raised thousands of dollars for JDRF over the years and it is because we BELIEVE they invest time in many, many research areas. The walk is FUN. The walk is EASY to raise money. The funds go to so many varied areas of study its bound to help us all somewhere (yes CGM!)
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