Dr. Faustman, whose lab is doing research into a possible cure for type 1 diabetes, has a new web site.
The new site design includes information about the current phase 1 clinical trials for the diabetes cure. The support section provides information about organizing an event to support the research work. And the news section lets you read all of the newsletters produced by the lab.
Dr. Faustman plans to start phase II trials later this year. To support this work we need to raise $25 million. You can now donate directly to this work from another part of the support section of the site.
The new layout makes it much easier to read all the current information about Dr. Faustman's research. Now all we have to do is wait for more news about the progress!
Boston to Dublin Marathon for Type 1 diabetes cure
Brian Callahan is a friend of mine from Massachusetts, who's working to cure type 1 diabetes. He tried to talk me into taking part in a marathon in Dublin, Ireland, but I decided it was too much for me - hence my triathlon last month.
Brian, part of his family, and over 11,000 others, will be running the Dublin Marathon on October 27. But he's working to raise funds for Dr. Faustman's research. Please consider supporting his efforts. More details below. (And no, Brian isn't going to bring me back any Irish sausages in exchange for this posting.)
Dear Friends & Family:
On October 27, 2008 my wife Ann Marie, brother Dennis & I will be running the Adidas Dublin Marathon [and my daughter Benna will be running the half-marathon (13.1)]. We will run each step of the 26.2 miles knowing that it is much more difficult for a child with juvenile diabetes (type 1 diabetes) to take insulin shots each day, to count each carbohydrate that she or he eats and to finger prick for blood sugars around the clock than it is to complete a marathon.
Three years ago we ran (along with Ray DeRosas) the 2005 New York City Marathon to raise funds for Dr. Denise Faustman and thanks to your generosity we raised almost $20,000.00. We will again run in honor of daughter/niece Grace Callahan and friends Alex O’Donovan, Jared Darnell, Lian McDonough, Oona Sullivan, Merry Morrison, Reilly White and Nicholas Killoran, all children who have juvenile diabetes.
People with type 1 diabetes require daily injections of insulin and blood glucose monitoring many times a day to try and control their blood sugar levels. High blood sugars levels increases the risk of diabetes complications like blindness, kidney disease and other health issues.
Thanks to donations and support from folks like you Dr. Faustman started a phase 1 human clinical trial on her approach for a diabetes cure. In 2009 she is planning to start phase 2 trials for this possible cure, and that phase will cost about $25 million.
Please consider making a donation to support Dr. Faustman's human clinical trials. There is no dollar amount that is too big or too small. Every penny goes directly to Dr. Faustman's exciting research.
You can sponsor us for any amount in one of two ways.
1. Make out a check to Massachusetts General Hospital and put Dr. Faustman Type 1 research in the memo field. Then send it to me at Brian Callahan, 77 Dover Street, Medford, MA 02155
I know there are lots of demands for your charitable dollars especially in tough economic times so any help you can provide us will be truly appreciated. One way you can help is to forward this email to anyone who may have a diabetic in their family.
Last Saturday dawned as a beautiful if chilly day in Portland Maine. I was up around 6:15 AM (45 degrees C) to put my triathlon gear into the car and by 8 AM I was on the road to beautiful Biddeford for the first ever Mainiac triathlon.
I put all my stuff at the transition area and talked with some other folks before the race started. As I wanted to keep my blood sugar under control, I'd decided not to eat any carbs for breakfast and I reduced my basal to 50% for 2 hours about 2 hours before race time. Thanks to my Dexcom, I was able to watch my BG creep up until it was around 215 before the swim started. So I ended up taking a small bolus before removing the pump and zipping into my wetsuit.
Then off to the beach with other triathletes to wait for the pep talk before race time.
After a recap of the rules and a lovely rendition of The Star-Spangled Banner, we all walked down the beach to the official starting point.
There were four swim waves separated by 3 minutes. I was in the third wave, for the over-40 men. So we got to see the first wave rush towards to the water while we waited nervously. As someone said, it was a beautiful photo moment.
After a few minutes of smalltalk it was our turn to rush towards the cool blue Atlantic water. Let me just say that the swim was a lot harder than I'd expected. Although I'd done several miles of swim training overall, the combination of the colder water and the slight current made this part a lot more difficult than I expected. So I made slow progress in completing the 1/4 mile, and I was fairly worn out when I did make it back to the beach. (Note to self, I need to learn to do front crawl!)
Then it was a 100 yard dash up the beach to the transition point. I dried quickly and got my pump back on as I changed into my bike gear. My blood sugar had gone up slightly, so another minor correction and a quick drink of some electrolyte mixture before getting on the bike.
The bike ride was 14.7 miles and it was really flat with nice scenery all along the way. Much of it hugged the coast and the breeze was gentle enough that it neither helped nor hindered. But I did notice my legs cramping up during the last few miles. I stopped twice to get a look at the Dexcom and drink some extra fluids, and my blood sugar was finally getting closer to a normal range.
Getting back to the transition area, my blood sugar was around 150. A relatively quick change into running shoes and top and I was off on the last 3.2 miles. Now the weather was a good deal warmer, so no long sleeves were needed.
One of the things that the run (really an extended jog/walk) taught me was just how hard it is to do even a short triathlon like this one. I appreciate much more how hard an Ironman event must be, especially with diabetes. By the time I got to the first water stop, my blood sugar was dropping faster so I drank some energy drink and walked on. At some stage I passed the 1-mile marker and was very disappointed that it didn't have a big 3 on it!
But I made it all the way home to the big timer and a "Bernard Farrell is now a Mainiac" announcement from the DJ.
The organizers did a great job. There were several folks from a local college who were training as masseurs, so I managed to get some relief for my brick-like calf muscles. That helped a lot.
Total time was a big disappointment, a little over 2:07. But looking at the biking time, I realize that it was the tiring swim that really messed me up. During the entire triathlon my blood sugars ranged from 230 to 130, which is a little high but a great range overall.
The good news was that I finished the triathlon and was still able to walk/get around for the rest of the weekend. Along the way, thanks to many friends, I managed to raise over $4,700 to support Dr. Faustman's research into a type 1 cure. (And I'm happy to take more donations if you're feeling generous.
By a strange coincidence I met Dr. Faustman on Monday, when I was giving another blood sample for her research. The news there is all great. In August her team published a paper showing that their approach kills the bad T-cells that destroy our insulin-producing beta cells. They also showed that this approach did not kill any important cells in the healthy blood samples. To my mind, that's important proof that this is unlikely to produce unwanted side effects.
Dr. Faustman also told me that she was interviewed recently and asked which venture capitalist was funding her research. She told the interviewer that it was being funded by lemonade stands and bike rides. He was amazed that this level of research could be funded in that way.
Those of us in the D-community understand the importance of this research for ourselves or our children. And we're doing whatever we can to keep it going, though it seems like an impossible task at times.
Thank you all for your support in my triathlon attempt. Next year (hah!) I plan to get to the finish line much more quickly and in better shape.
Attribution: The great photos were taken by my sister-in-law, Marie Mersereau.
She mentions an additional benefit to the Phase 1 trial. Besides validating that BCG has some effect on the bad T-cells that are killing insulin-producing beta cells, it validates that the various new blood tests that they have developed to track the bad T-cells.
She comments on the recent research showing that pancreatic cells can be transformed into islet cells. There's a lot covered in this 12-minute interview, it's worth listening to.
David Edelman's great video interview with Dr. Denise Faustman is now online. It's about 47 minutes long and well worth watching.
I was in the room when this interview took place - David and Elizabeth were generous enough to share this opportunity with me.
The interview provides a wonderful insight into Dr. Faustman's research and her thinking about a type 1 diabetes cure. They've also provided a transcript. (PDF)
If you'd like to support her research, it's not too late to support my triathlon for a cure. Or just go directly to the Mass General site and donate there.
If you're a regular reader, you'll know I've been offline for a few weeks, this was for good reasons. We visited Ireland for a big family reunion and had a wonderful time.
I'm finally back on East Coast Time, but still missing all of my family in Ireland (including my darling grand-daughter) and the wonders of beautiful Kilkee in County Clare in Ireland. I promise to post a few pictures in the next fortnight or so.
In the last two years I've raised funds for Dr. Denise Faustman's research into a cure for type 1 diabetes. This year, the Bike the Miles folks don't have an event as they their fund-raising goal. So I've been preparing to take part in a triathlon and use that as a fund-raising opportunity. For me, that's a big challenge, even if this isn't an Ironman-type triathlon.
So on Saturday September 6th I'll be taking part in the Hyannis Sprint 2 Triathlon on Cape Cod. The triathlon has a quarter-mile swim, 10 mile bike ride and 3.5 mile run. If you're going to be there, I'd love to say hello.
I'd like to challenge you to sponsor my triathlon so I can raise more funds for Dr. Faustman's research. In previous years I started fund-raising in the spring, so I know it'll be a stretch to get more than $3,600. But that's my goal for this year: $100 for each year I've had type 1 diabetes.
I'll do the sweating and you just have to write a check of any size. (If you're a US taxpayer the amount is a charitable donation.)
Your check should be made out to Massachusetts General Hospital with Dr. Faustman Type 1 research in the memo field.
You can either send it to me at my P.O. Box Bernard Farrell P.O Box 937 Westford, MA 01886
Or you can send it directly to the hospital at The Massachusetts General Hospital-East Attn: Lynne Murphy Building 149, 13th Street, Room 3602 Charlestown, MA 02129
If you're doing this to sponsor my triathlon, please send me an email (bernard.farrell@gmail.com) letting me know how much you sent to Mass. General so I can track the level of sponsorship I get.
As always I'm grateful for any support I get in this effort and I do plan to have a page acknowledging all the support I get (let me know if you don't want your name on this page).
He's going to post the interview once he's had a chance to transcribe it (be patient, this will take time).
Dr. Faustman did an excellent job of explaining how they arrived at the approach being trialled, to use BCG as part of a possible type 1 diabetes cure. The current trial (and remember that many trials fail) is to determine whether a low dose of BCG has any effect on the bad T-cells. The trial completion and trial results won't happen until sometime next year. Remember, these are phase 1 trials and many phase 1 trials fail.
I asked her how much it would cost to complete phase 2 trials. The price tag is $25 million. That's a lot of fund raising and asking people for support.
They can't do trials in multiple centers because the equipment they've developed for testing results is not portable. In one case they moved a piece of equipment across the lab. It took 9 MONTHS to recalibrate it and get it working again.
We saw the equipment (no photos allowed). It's complex and large. The size of a full sized fridge on its side. To take a blood sample and extract the T cells takes an entire day. This is not fast work. They're doing it in a methodical and painstaking ways. At the same time she's taken some bold steps to move forward when others might have held back.
Each time I've met Dr. Faustman I've been impressed by her ability to clearly explain complex processes and experiments in layperson terms. She clearly understands the urgency of this work, but she needs to do it 'the right way' so that the results cannot be questioned. Remember when her original work was published in 2001, 2002 a lot of scientists did not believe the approach would work. It's now been replicated in several other labs.
I know the timescales aren't fast enough for any of us. This type of scientific experimentation takes time and a lot of effort. The lab has had delays in the past because they were waiting for funding. The best way we can speed the process up is to continue to fund the work.
I'm hoping to run in a triathlon later this year and use that for fund-raising. I also use the (small) ad revenue from my diabetes search engine to support the lab. There are many other ways to sponsor the work of the lab.
Once David blogs about the interview, I'll update this post with a pointer to it.
This is the most exciting news I've had since my diagnosis with diabetes 25 years ago.
Today ClinicalTrial.gov posted a trial announcement looking for people to participate in the first trial for a possible cure for type 1 diabetes. This is based on the research led by Dr. Denise Faustman over the last decade.
To quote the site "This is the first step in trying to cure established type 1 diabetes". Tell me that's not a big thrill.
When I spoke with Dr. Faustman in January, she was hoping that they could trial this approach with relatively small numbers of people. It seems she was successful, they are looking for 25 subjects to participate in this trial. Dr. Faustman mentioned that the early trial would be used to try and establish basic dosing information and determine whether the approach actually works in people.
As usual for this type of trial there will be two groups of participants, some taking BCG and others taking saline as a placebo. You would receive an inoculation at the start and at 4 weeks into the trial. It's a double blind trial. Neither your nor the investigators will know who's receiving which substance.
BCG has been used for many years as a vaccination for tuberculosis. It's also used in immunotherapy for cancer and other diseases. It's low cost, approximately $3 for a tuberculosis vaccination. It's also not 'owned' by a specific pharma company, so it should be readily available.
I would sign up for this trial today...but I don't qualify. My age and previous inoculation with BCG exclude me. I do hope that's not always the case.
If you're thinking about it, please take a close look at both the inclusion and exclusion criteria. There are a lot of these.
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!
If you've read this blog for a while you may know that I've done some fundraising to support the research by Dr. Denise Faustman into a possible cure for Type 1 diabetes.
I'm subscribed to the Yahoo! newsgroup about this work and today they posted a pointer to a brief USA Daily article with a small amount of news.
This is slow work and Dr. Faustman is conducting it in a careful and rigorous way. Which makes some of us impatient for results. But I'm eternally optimistic about it all.
In early January I'll be at the lab to get some blood drawn that will be used in the research. A good friend from work will also be there as a healthy volunteer! What a guy. While I'm there I hope to meet with Dr. Faustman and ask her some questions about the work. I'll post what I learn online (mid-January).
Updates: I did meeting with Dr. Faustman in January. In March there was an announcement about the start of clinical trials for a possible cure for type 1 diabetes, based on her work.
The Diabetes Technology Blog is focused on using technology to live life to the full with diabetes. I review new diabetes technology including: blood glucose monitors; continuous glucose monitors; blood sugar meters; diabetes software and living with diabetes.
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 36 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 Plus CGM to track my blood glucose levels.
I'm blessed by God, and every day brings the possibility of a cure.
The new site design includes information about the current phase 1 clinical trials for the diabetes cure. The support section provides information about organizing an event to support the research work. And the news section lets you read all of the newsletters produced by the lab.
