In early January I visited the Mass General Hospital research lab where Dr. Denise Faustman is leading research into a possible cure for type 1 diabetes. I was there to give a blood sample for use in this research.
If you've ever met someone you've admired for a while, or maybe a rock or movie star, then you'll know how I felt as I spent time with her.
Over the last two years I've taken part in two bike rides to raise funds for this research. But now I had a chance to actually help support the research in a more direct way.
The lab is drawing samples of blood from people with type 1 diabetes, and 'healthy' volunteers. Because they're having trouble getting healthy volunteers, they ask everyone with diabetes to bring a volunteer with them. These folks must not be directly related to you, and not have any auto-immune diseases. I was fortunate that a friend of mine from work kindly offered to come with me. Paul is one of the founders of the yard sale search site GoYarding.com.
I met Dr. Faustman early in the morning. They do all the sample collection early in the morning so it doesn't interfere with work and school schedules. While we talked, she collected four test tubes of blood from me. She explained that some of this blood was tested using machinery they're developing and some was tested manually by one of the researchers. I believe that manual testing takes about one day to complete.
They're trying to accurately measure the amount of T cells that I have. Her theory is that these T cells are responsible for destroying my insulin producing beta cells. These cells also produce amylin. This is now available as an injectable drug called Symlin that I've written about several times.
You can see a short video of Dr. Faustman and an animation of how they believe the T cell process works on the Iacocca Foundation website.
Some of the blood is also sent to another research lab. They have a method for measuring autoantibodies in blood. She explained that autoantibodies are produced when beta cells are destroyed. So if these were found in my blood, that would indicate that my body had recently lost some beta cells. Which would mean that my body is still making beta cells, 35 years after I first got diabetes.
She hopes to start trials before too long where they will be administering low doses of BCG to see if this can destroy these T cells. BCG is used in Europe as an inoculation against tuberculosis, and is also used as an immunotherapy treatment for bladder cancer.
BCG has been around for a long time. As it's already approved for use as a medical treatment, it is likely that getting approval to use this for other purposes will be quicker and easier than for a new drug. It will probably also be less expensive.
Dr. Faustman's hope was that the FDA would permit trials with low number of subjects. This makes it easier to administer the trials because getting enough people is always a challenge and testing the outcomes is easier with smaller numbers.
She explained that there will likely be several trials with increasing doses, so they can determine if it works, and at what dosage levels. Clearly having automated measurement machinery will make this process a lot faster. They've been working on developing this machinery over the last few years.
I told her that it would be wonderful if they started a blog, even a low-volume one to keep everyone informed about their progress. But she's concerned that will take away from research time and also that the blog may draw a lot of comments that would need to be read and handled.
I imagine the entire lab must feel a little like Banting and Best after insulin was first discovered. They had hundreds of parents from around the world contacting them to try and get their children treated. And that was in the days before the internet and e-mail.
It was a real pleasure spending some time with Dr. Faustman and getting an update on their progress.
I have another appointment in September to get another blood draw. As Dr. Faustman pointed out, this is an easy way to get the latest news. And by then I hope to have completed another bike ride to support her exciting research. I can't wait!
I was diagnosed with Type 1 diabetes on September 10, 1972. 35 years ago today.
I went to the hospital after a doctor diagnosed me during a phone call with my Mum. I had many of the usual Type 1 diabetes symptoms:
Extreme thirst. I was drinking non-stop. Unfortunately a lot of it was sodas of various sorts.
Non stop peeing. See previous item. Some of this would have been my body flushing excess sugar from my system.
Weight loss. In the week or so before going into hospital I lost almost 12 pounds.
Leg cramps. I'd wake up in the night and pound my calf muscles trying to get them to relax. This was one of the worst symptoms for me.
Fatigue. I thought this was because of waking up to pee or fix the leg cramps.
Ketones. At the time I had no clue what this was. I just had a fruity smelling breath, especially if I belched. And I seemed to be doing that a lot.
Infections that won't heal. I had a small cut on my foot that had been there for over 2 weeks and wasn't getting any better.
When I got to hospital my first blood sugar test was 800 mg/dL. (The usual range for someone without diabetes is about 75 to 100 mg/dL.) Shortly after getting there I had my first insulin injection, and I've been taking it ever since.
Now it's 35 years later and what's to look forward to? Plenty I think.
Yesterday at my bike ride, I spoke to someone from Dr. Faustman'sresearch lab in Boston. They're continuing to make progress on a possible cure for Type 1 diabetes. Personally (this is just me talking) I'm expecting that I won't be taking insulin by the time my 50th d-anniversary rolls around. Maybe because of Dr. Faustman's work, or because of other research that's happening around the world as I write.
And what happens if I'm wrong? Well that's OK. It won't be the first time.
God has some plan for me. He's a good guy and he's taken great care of me and my family so far. So I'll just continue to place my trust in Him, because I'm fearfully and wonderfully made.
I drove down to Connecticut this afternoon for my bike ride tomorrow. The organizers have done an awesome job marking the route. I drove around it after arriving and it looks challenging and fun.
You'll notice that I now have a Patient Blogger badge in my sidebar. I applied for this after reading Amy's great post about ethics. I hope this gives you some confidence that I work hard to write a blog that follows these rules.
Tomorrow I'm planning to try a little experiment in live blogging. Recently I signed up for a Jott account. Marston made me do it! This nifty web 2.0 application lets you send messages by calling a toll-free number and talking carefully. I've set it up so that I can Twitter and/or blog from my mobile phone.
So tomorrow during my bike ride I plan to use Jott to update Twitter on how things are going. I may also post to the blog during a rest in the ride. We'll see how well it works in real life.
Just a quick note. My local newspaper the Lowell Sun published an article about my bike ride on Sunday. If you'd like to read it, it's available on the web, and I also scanned it in. And I'm still taking donations for the ride. ;-)
Update: I forgot to point out that my good friend Manny, who is the mover and shaker behind TuDiabetes.com, did all the heavy lifting on this article. He sent out a press release to several local papers for me and generated the interest that led to the article. Thanks Manny, you're a star.
In a strange and somewhat sad coincidence the facing page has an obituary for a 29-year old who died from diabetes complications. I think folks without diabetes don't realize this happens.
I know where the week went. After a lovely Labor Day, I've been taking the children to school. Which means I've been adjusting my sleep schedule. And that's just...tiring.
Anyway, here are some random things.
Terry Keelan has a poll on TuDiabetes asking how people tape up their Dexcom sensors. For those not in the know, the Dexcom 7 continuous glucose monitor has sensors that can be used for more than seven days. I previously blogged about how to reset the receiver to do this.
But one of the problems is that about day 7 the adhesive on the sensor starts to fade. So how do you tape it up to keep it on. Inquiring minds would like to know. Have a look at the picture Terry provided
Then go to TuDiabetes and let him know your technique for keeping Dexcom sensors in place.
Some time ago I created the Diabetes Search Engine using Google's Custom Search Engine facilities. I think the DSE provides very useful results when you want to search about anything related to diabetes. Building the engine was a little tricky, so I wrote an article about the process. The article was published today on O'Reillys ONLamp.com web site. Warning, the contents are strictly for Geeks with Diabetes. You have been warned.
Finally, this weekend in Connecticut is the big ride. I've already raised over $10,000 to support the important research by Denise Faustman into a cure for Type 1 diabetes. But you might like to stop by and cheer the riders on. The race is in New Canaan and most riders will be coming back between noon and 12:30. Maybe I'll see you there. I'll be the 50-year old diabetic with the big grin on his face! And hey, it's not too late to support me.
Yesterday was such a lovely day that I decided to dust my bike off and start training in earnest for my fund-raising bike ride. Which explains the title of my post.
Like many of us with Type 1, I feel that I'm in charge of my control and my destiny with this disease. I can get help from my healthcare team, and from my great friends online at TuDiabetes.com or the Diabetes OC community. But I'm the one who lives with the disease 24 hours a day.
I've walked and ridden many times over the last 10 years to help push this disease back. Last year I was able to raise about $7,500 to fund the important research being done by Dr. Denise Faustman. She really seems to be close to figuring out some important parts of the puzzle that is a diabetes cure.
This year I really want to raise $10,000, which is an impossibly large amount. I've been e-mailing and talking with friends and family, but that amount of money doesn't come easily. So if you feel like supporting me, do it now. Just drop by my fund-raising page and give as much as you can afford.
Yesterday I was on my bike for about an hour and managed to cycle for 11 miles. I practiced a lot on getting up hills without dropping my speed too much and without having to get out of the saddle. I need to get my average speed up to 15 miles per hour, so I can complete a 50 mile ride in a little over 3 hours in the saddle. So I've got a ways to go. And now I'll need to start getting up really early so I can get in a 40 minute ride before work.
It's hard work. But what pushes me forward is this thought.
What if the money that I raise (with your help) hires the researcher. You know, the person who figures out a key part of the cure. Wouldn't that be something?
Tom and Ray Magliozzi, those crazy Car Talk guys, were kind enough to send me a photo wishing me good luck in my diabetes bike ride.
I'm trying to raise $10,000 for this important research on a cure for Type 1 diabetes. Right now I'm 25% of the way there, and with your help I can reach my goal.
Why not do it now, before you forget about it? And thanks, it really does help.
Sorry that I've not posted in a while. We all went to Washington DC for a week (school vacation week here in Massachusetts).
What a busy time it all was. The Dexcom continuous meter was especially useful on those days where we walked about 3 miles (and we had a few of those) and grabbed food on the run. The weather was terrible, but we all had a great time.
And thanks all for the responses to my poll. I'll try and summarize before the end of this week, if you have friends with diabetes please encourage them to answer the five simple questions.
On Sunday I fly to Las Vegas to attend Mix07, the Microsoft technical conference for web design and development. If you're likely to be there, e-mail me and let's see if we can connect.
And if you have a few dollars to spend on a great cause, please drop by my fund-raising page and support my bike ride coming up this September. I'm planning to raise at least $10,000 to directly support Dr. Faustman's research towards a cure for Type 1 diabetes - it's great research and really needs this independent support.
Spring. When a young man's thoughts turn to fund-raising bike rides
Oh no, I hear you say. It can't be that time again.
Well it is.
I had a lot of fun in September of last year taking part in the Bike the Miles event to raise money that supported Dr. Faustman's work at Mass General Hospital.
The ride itself is on Sunday, September 9th. It will be starting in Danbury, CT. If you want to ride with me, we could make a D-Bloggers team!
This time I'm starting sooner and aiming to raise a huge amount of sponsorship.
"How much sponsorship?", I hear you say.
Well why not click on my fund-raising page now and find out. Go on, just one click is all it takes. I'll be here when you get back.
And hey, if you hurry you might be my first sponsor. And I'm going to need lots of them.
Here's my promise (this is a bit like public radio fund raising), I'll stop mentioning it on my blog once I hit my target. And this year, I won't be revising the target amount.
Wish me luck. Tell your friends and family. I have no shame.
Updated to add information about the date and place.
Diabetes: technology, devices, software, and other stuff.
About Me
Name: Bernard Farrell
Location: Massachusetts, United States
I was born in Ireland and now live in the US.
I have had Type 1 diabetes for over 35 years. I struggle with my blood sugar, the same as most people with diabetes.
I wear a Cozmo 1800 insulin pump and a Dexcom SEVEN CGM to track my blood glucose levels. I also take Symlin to help control my post-meal blood sugars.
I'm blessed by God, and every day brings the possibility of a cure.
If you've ever met someone you've admired for a while, or maybe a rock or movie star, then you'll know how I felt as I spent time with her.
It was a real pleasure spending some time with Dr. Faustman and getting an update on their progress. 
