Thursday, February 24, 2011

JDRF Vs. Faustman

About three weeks ago I came across a post by DOC founder Allison Blass. I was very interested to read it for a couple of reasons. One, it talked about losing faith in a cure for Type 1 diabetes. And, two, it was written by Allison. I don’t really know Allison, but I kind of do in a round about sort of weird internet way. Allison’s blog is one of the first blogs I started reading when our world came crashing down about 5 and ½ years ago. She also interviewed me one time for a magazine article that she wrote. And, we even got a Christmas card from her once. So, I was interested to see what she had to say on the subject. I think she did a great job writing the post. She was able to state why she felt how she did without begrudging others for feeling differently.

Prior to reading her post, I had read a little chatter on the internet about JDRF saying they were not as focused on a cure, or something to that affect; or more like they were focusing on a cure still, but also focusing on better treatments of Type 1 diabetes. I never gave it a second thought, really. It wasn’t news to me. It didn’t anger me. It didn’t shock me.

You see, when Riley was diagnosed in October of 2005, the minute we got home from the hospital I began to scour the internet for any information I could find. Inevitably I searched about a cure. Of course, JDRF was one of the first web pages to pop up. After all, JDRF is an acronym for Juvenile Diabetes Research Foundation. I read about them. I read their mission statement. I did my research on them.

I also found some articles written about research being done at Massachusetts General Hospital by Dr. Denise Faustman. I read about her research. I read about what she had done with mice. It all made sense to me. Something just clicked inside of me and said, “This woman is dedicated to finding a cure”. And, I was hooked. She hadn't even begun human clinical trials yet.  The phase I of her trials began in January of 2008.  She is now raising money to fund Phase II of the project. 

The next year, one day after Riley’s one year anniversary, I held the 1st annual Walk of Hope. Every cent raised went to Dr. Faustman’s research. I’ve held several other walks since then. All of the money went to Dr. Faustman’s research. Every walk, every fundraiser, every penny saved in Riley’s “hope jar” (featured in my blog profile pic), goes to her research. And, it always will, until the research ends.

Have I supported JDRF? I guess I have a little. I have donated to others who have walked to raise money for JDRF. Some people I know and some I don’t. Riley had a T-shirt sent to him several years ago by a little boy who he will probably never meet. I “met” his dad through his blog and donated to his walk. In turn, he sent a T-shirt to Riley. JDRF is prominently displayed on the shirt. Riley wears it with pride.

I don’t have anything against JDRF. But, and it’s just my personal opinion, they are not really focused on a cure. There, I said it. I know that infuriates some people, but that’s how I feel and I have felt that way for over 5 years now. I do believe they are very committed to finding better ways to manage diabetes. When Riley was diagnosed, continuous glucose monitors were talked about, but not on the market. I remember that even back then JDRF was throwing around an idea about a closed loop system, AKA: an artificial pancreas.

I feel the same way about it now as I did then. It’s quite simple really. That’s not a cure. I want a cure. Period. I want my little man to live his life without depending on a drug to live. And, I’m not being dramatic here. Without insulin, Riley would die. I want him to know what it’s like to eat a snack without having to jab himself with a needle first. I want him to know what it’s like to not be attached to a machine 24/7. I want him to play sports without worrying if he will go low. I want him to have a functioning pancreas again. To me, anything short of that is just a band aid. Band-aids come off. They have to be reapplied. They cover up wounds. I don’t want him to be “wounded” anymore.

I know that JDRF also funds research projects searching for a cure. (As a side note, they haven’t given one cent to Dr. Faustman.) But they put the majority of their money into projects such as the artificial pancreas. And, that right there is why I have never had a fundraiser for them. I want ALL of my money to go towards a cure.

Don’t get me wrong, I am grateful for organizations like JDRF that are trying to find better ways to manage diabetes. Like I said, when Riley was diagnosed you couldn’t even get a continuous glucose monitor. Now, many people have them. And, in the years since they came onto the market I’ve been told their accuracy has improved quite a bit. Not only that, I now bolus Riley with his pump from across the room via his blood sugar machine. It is quite wonderful.

And, all of this technology is great because it helps improve the lives of those touched by this disease. It helps control sugars, which in turn decreases complications and increases my little boy’s now shorter than average lifespan.

But, in the end, he’s still attached to his pump 24/7. He still could go into DKA from the flu. He could go into a coma from a low. And, my biggest fear, he could go to sleep tonight and not wake up in the morning. All because of Type 1 diabetes.

As parents we all want the very best for our children. We want to see them succeed. We want to see them live their dreams. Some think that better technology is the answer.

Me? I know Riley can live his dreams with or without Type 1 diabetes. But, I would rather see him do it without an insulin pump tethered to his side, without the worry, the emotions, the complications that come along with this disease.

So, I will continue to hope. I will continue to pray. And, I will continue to use that improved technology until the day that Riley does not need it anymore. And, I firmly believe, with all my heart, that Dr. Faustman’s research will lead us there.

**(I have recently began a letter writing campaign to raise money for Dr. Faustman’s research. If you would like do donate, please click here. All donations are tax deductible.)

15 comments:

Lorraine of "This is Caleb..." said...

I think it's wonderful that you support Dr. Faustman's work. I agree - she is one smart cookie and she's committed to the end goal. We have supported her for years as well.

Thanks for this post and perspective.

Wendy said...

I applaud your steadfast loyalty.

I, too, have spent a considerable amount of time over the past 5+ years evaluating the best use of our time, energy, talents, and resources when it comes to diabetes advocacy.

In addition to the ADA, we have contributed financially to all 3 "major cure-focused contenders".

For us, however, it comes down to quality of life. If a cure showed up tomorrow, how long would it take before it were to become available. Realistically, a cure won't be part of my daughter's childhood. By the time she's 22, she will have lived with this beast for 20 years. She needs access to anything and everything possible that can help decrease the risk of developing long term complications. While a cure will, no doubt, enhance her life -- it will never replace lost eyesight, poor kidney function, or nerve damage.

This announcement hasn't made me want to stop supporting JDRF. I see our family continuing to participate in the walk for years to come.

It has, however, forced me to stop and ponder some pretty heavy stuff. There are children dying every day because they are unable to access insulin...yet insulin has been around for almost 100 years! I have found myself struggling with a personal moral dilemma about putting so much of our God given gifts into cure focused organizations...knowing that those dollars could, literally, save another mother's child. For this reason, our family has shifted focus dramatically, and we plan to pour out as much love as we can into the Life For A Child program.

Kelly said...

Im with Faustman as well. And JDRF. And the ADA. Anyone that improves our lives and brings families together really! Great post Penny....I thought about diving into this myself...but Im better at just speaking from the heart. Thanks for this!

Anonymous said...

I do believe that JDRF and the Diabetes Research Institute are focused on a cure, but since 20 years of research have not yielded one, JDRF, at least, has expanded their focus to make life livable in the meantime. DRI is still focused on a cure. Dr. Faustman's research should really take top priority as far as fund raising goes for now, because she is not getting much in the way of private funding. And, though I do not have the same faith that this one drug will cure all or most of Type 1s, it will at least bring some answers. She, herself, admits she may need a second drug to effect the cure. If she does not get the funding she needs, we will never know and she will not be able to accomplish her goal. And I think, with the second drug, she has a good shot. So, I will donate. And donate to the DRI. JDRF is great too, but now last on my list. But I do not want to "wait for Godot" so to speak. I need advances now. Our child is too close to adulthood for me to be blase about the daily day to day management of this disease. It is too hard and I don't want her to have to do all that we do.

A. Morrissey said...

from A. Morrissey: Wonderful description of the struggle many of us face in trying to support JDRF when they refuse to give even a small portion of their funds to the Faustman research. I would like to see all members of JDRF contact the organization's leaders to let them know we want a portion of their funds used for Faustman's research. Your readers might be interested to know that they can buy a small book of amusing Christmas poems whose profits go to the Faustman research. Santa's Adventures is the title and it's available at Amazon.com and Barnes & Noble.com. The book's web site is www.diabetesSanta.com.

Bobskat said...

My husband and I have been hosting a golf outing for the past three years to help Dr. Faustman. (See our web site: www.drivetocurediabetes.com) I have stopped giving money to JDRF. My daughter's Endocrinologist even said that JDRF should have found a cure by now.
Hurray for Denise! Phase II trials will start soon as they have raised the money for the first year: $8.5 million.

Anonymous said...

I agree that Dr. Faustman (Harvard, Mass General Hospital) should receive support from JDRF. (At least the ADA had her speak at a conference.) Please check out the book Santa's Adventures and its sequel. All profits go to Faustman!
-Sue

Anonymous said...

For someone who's had type 1 for 35 years, I've come to appreciate all the advances JDRF has helped to fund. Home testing meters, the pump, symlin, pens - among many many others. For those of you who come on these things and say "I've stopped giving", you don't get it. I support Dr. Faustman as well. I will continue to help support any organization looking for a cure. If you think JDRF has stopped funding researchers to find a cure, you are nuts. Most of the hype is on the artificial pancrease now. It's not a cure but it sure makes things easier. If you ever had to pee in a cup to test sugars, wait in the lab for an hour to get a fasting blood sugar because there were no home testing meters, carried around the brick of a first generation meter or worked off of the exchange diet (no carb counting) then you know what I'm talking about. You will come to realize that with this disease, you can't put all your eggs in one basket.

Unknown said...

I agree 100% with everything you have said. I am a mother of two T1 girls. I support Denise Faustman. I just got upset reading a friend's comment on facebook about writing to congress to support the artificial pancreas. If all funds were used for research for a while, maybe a cure could be found. I just got a cgm for my 5 year old, and I'm trying to decide if I can put it on her. I put it on me, and it hurts. I hate torturing her. We need a cure now.

Tammy said...

I just heard Dr. Faustman speak about her work to cure Type 1 Diabetes. I'm sold. I am going to begin a large fundraising campaign for her (already FDA approved) phase two trials. She needs to be funded! How can we get the word out and rally behind her research so that people see it as a credible attempt at a cure? Faustman Lab should be as recognizable to the public as is JDRF. Any ideas? Please email to tammytaylor@me.com

Kim said...

My daughter was diagnosed with Type 1 Diabetes last October when she was just 18 mos. old. She is a little trooper has allows us to manage her diabetes without fuss even though it breaks my heart that she has to deal with it on a daily basis.

Since she was diagnosed, I have scoured the internet for all of the information I could find about the disease. I have learned a lot and come to appreciate that diabetes mgmt. has come a long way in the last 20 years and that she has a good chance of having a good quality of life due to all the advances that have been made in diabetes management.

At some point in the last few months, I stumbled about Dr. Faustman. Everything I read made sense and gave me so much hope. What struck me as odd was the resistance that she received from her colleagues and the JDRF when she announced her success with lab mice. That the JDRF even funded 3 other research groups to disprove her research. I couldn't imagine why that would be until I realized that there is no money to be made in a cure. We are talking about a billion dollar a year industry that stands to lose a lot if a cure is found especially with a cheap generic vaccine. No big pharmaceutical company is going to contribute and since the JDRF refuses to disclose how much of the money they raise goes to research for a cure vs. Administrative costs, I began to suspect that maybe they are not so eager for a cure either.

I have questioned my local JDRF chapter as to why they are not funding Dr. Faustman's research and I get no real response. In fact, this is the response I got:

“JDRF is well aware of Dr. Denise Faustman’s research and latest publication. As our CEO Jeffrey Brewer was quoted as saying in a recent Reuters article, we are interested in the results and feel they are worthy of further investigation. Although JDRF is not currently funding Dr. Faustman, we have funded her in the past and we’ve had multiple meetings and conversations with her to discuss her research and we will stay in close contact with her as she moves forward with the next phase of her trial. JDRF and Dr. Faustman share the same goal of delivering a cure for T1D for ourselves, our loved ones, and everyone else touched by this disease.”

My question is why aren’t they supporting her now? They should be giving something towards this research if it is in need of funds and has come closer to a cure than anything else. No one is asking the JDRF to “put all eggs in one basket”. They should, of course, continue to invest in improving diabetes management until a cure is found, but they should not blatantly refuse to support this research. Doing so makes their motivation suspect to say the least.

Dr. Abe said...

Dear Penny,

My name is Dr. Abdul and we are working on a project to help fund scientists that are actually working to find a cure.

We would like to hear more about your perspective and if you are interested on serving on a diabetes board.

Please write me at drabdul@cureall.org

Thank you

Ivy Patten said...
This comment has been removed by the author.
Ivy Patten said...

am right there with the majority of you. My son has had diabetes since he was 3, he is now 18. Children's Hospital Boston told us the night he was diagnosed that there would be a cure in 5-10 years. It has now been 15 years and sadly I don't feel like a cure is that close. My JDRF walk team has raised almost $200,000 for research over the years, however, I believe in what Dr. Faustman is doing. I am disappointed that JDRF's politics has to enter into a place where it puts my son's health and future happiness at risk. I believe JDRF should absolutely fund Dr. Faustman-at least fund her partially. It does feel like JDRF is looking more for a mechanical "cure" (better daily mangement) than an actual cure. I don't want him to have to add another device. I want him to be done with relying on devices. 15 years feels like a lifetime to this Mom. I could take it if it was me, but my son also has Celiac, so his days are complicated! He is headed off to college this fall and I was praying that a cure would be here in time for that major life change. He is much more pragmatic about all of it. He tells me he thinks there will not be a cure in his lifetime because too much money is made on strips, pumps, meters, insulin, testing supplies, pump supplies, glucose tabs, etc.

Anonymous said...

I've been a bit suspect of JDRF for a while now. Years ago they spent more money lobbying for embryonic stem cell research than they did funding diabetes research. At the time, ESC research offered the hopeful potential of one day leading to a possible treatment (note all those qualifiers). It's been ten years and ESC research still offers the hopeful potential of one day leading to a possible treatment... yet the JDRF still lobbies for it. I too stand with Dr. Faustman.