Monday, June 21, 2010

An experience so great, I can't even think of a title

   OMG What a week!  I spent the last couple of months looking forward to it and last week it finally came.  I really consider myself very fortunate to have been able to attend the JDRF Canada Annual General Meeting.  I'll warn you now… this is a long one.

   As a lot of you know already I've been a little down in past weeks about Jonathan's diabetes.  This trip couldn't have come at a better time for me.  Not only did I get to meet people from across the country who are on the front lines, I also had the pleasure of meeting so many parents and a large number of T1s who deal with this day in and day out.  We worked, we played, and we celebrated together.  We heard from some of the leading minds in immunology, genetics, medicine, diabetes research, and were given a great overview of what has happened in the past year and some of the awesome things that are on their way.  It was quite clear to me that the knowledge and progress in the field of diabetes is growing at an exponential rate.

   I know a few people who have been hearing "the cure is five years away" and they're been hearing it for decades.  No one this past week was overly eager to spell out any definitive timelines, but what they did do is demonstrate that there is undeniable hope and confidence that things continue to get better and we have great cause for optimism.

Here are some of the details

Wednesday evening I had the pleasure of meeting a mother who is working her butt off to help introduce legislation that would ensure students with diabetes would have a minimum standard of rights, province wide.  While we've personally achieved a level of success with our school that I considered "functional", we apparently are the rare exception.  While this bill currently does not provide much for students who can not self manage, it does provide for certain basic needs such as unrestricted access to water and washrooms, the right to test and treat in class, and the right to participate in all aspects of student life such as field trips, extra curricular activities, and even fully participate in class.  One story in particular that sticks out in my mind is that of a young boy in an Ontario school who in order to treat a low with a snack was forced to leave the classroom (a single unit portable) and stand alone in the snow, unsupervised.  Although is may seem like common sense, these basic things unfortunately need to be made law before they are assured and mind-boggling idiocy is kept to a minimum.  Further change is needed for students that can't self manage and steps are being taken to get that included, but it is a long and difficult process.
   Immediately after my meeting, I was introduced to a number of staff and volunteers from large Ontario cities and was immediately able to begin growing my network of contacts.  Of course one of the hot topics was... students with diabetes.  A JDRF employee from Ottawa offered up some great materials for us to add to student/school packages to help ease the transition for students and staffs through better education about diabetes and it's management.  A small step, but an important first one as increasing knowledge with help foster understanding and involved support.

Thursday evening was the official start of the AGM.  A reception was held at the hotel we were staying at.  A number of volunteers from across the country were recognized for their exceptional achievements this past year, including 10, 20, and 25 year service awards.  This really kicked off our weekend as it was an opportunity to meet a lot of the individuals before we dove into what was going to be a huge day Friday.  I was, and still am, at a loss for words to describe how quickly we all started bonding - not only returning team members, but also newbies like myself that were immediately welcomed into the fold.  One thing about that night though…   If anyone ends up with pictures from the karaoke bar, that's not me!

Friday was incredible, not only as a volunteer, but also as a parent of a child with diabetes.  We started the meeting with a brief update on the state of the foundation.  Although 2009 was a tough year, it was the best year, financially, for JDRF Canada… ever.  Larry Soler, Executive VP - Government Relations & Operations from JDRFI addressed the audience and discussed a number of topics ranging from laboratory embryonic stem cell policy, to the latest in the Artificial Pancreas Project.  Like so many working at JDRF, he is also a Type 1 Diabetic and has a personal interest in seeing successful breakthroughs.  Andrew McKee, President & CEO - JDRF Canada, followed with a more detailed look into the JDRF Canada affiliate and the highlights of the year.  We were also lucky enough to have The Honourable Gary Goodyear, Minister of State for the Federal Economic Development Agency for Southern Ontario, speak to us about the province's and his own commitment to JDRF and specifically the joint funding with JDRF of the Canadian Clinical Trials Network, a combined $30,000,000 investment in bringing research into cures and treatments towards reality.

   Our Senior VP of Scientific Affairs, Dr. Robert Goldstein, delivered a fantastic lecture on diabetes research and a detailed overview of current work being done in the three main areas of prevention, treatments, and cures.  I'll admit, it was a lot for a lay person to digest, but it clearly demonstrated that there are a large number of people working diligently to bring products to market faster than ever before that will have real and beneficial results for those living with diabetes.

   Probably my favourite speaker of the day was Dr. Tim Keiffer.  Early on he was involved in the development of the Edmonton Protocol for islet transplantation and today is developing gene therapy solutions to prevent and reverse diabetes.  And I finally got a straight forward answer to my question: What happened to the alpha cells?  Since day 1 I've wondered and asked, and no one has been able to confidently give me a reasonable answer.  Everyone's been clear about what became of the beta cells - the rogue T cells killed 'em off.  The beta cells are gone and no more insulin is going to be produced in the pancreas - but if it's just the beta cells that are gone, why aren't the alpha cells doing their job and producing glucagon and preventing the dangerous lows?  Reasonable answer: The alpha cells are still there but they are impaired, in two ways.  First, alpha cells can change into beta cells, and when enough beta cells are gone the alphas get called upon to hop the fence and end up facing the same fate as their predecessors.  Second, the damage done to the beta cells in the islets weakens the overall structure of the islet and significantly hampers the remaining alpha's function.  So, I would sum it up in that if the betas were KIA, the remaining alphas are POW, and there is no Geneva Convention in the pancreas.

   Dr. Keiffer also presented a very powerful pair of slides that I wish I had to post up here, but basically depicted a graph of a post islet transplant patients' blood glucose levels on a CGM showing consistently in range BG with little to no insulin injected and that of a "well managed" diabetic whose regular meter tests were in range but when on a CGM showed that they were significantly out of range more than 80% of the time.  It was one of the things this past week that finally moved me to the decision that I'll talk about later.

   We were presented with the winner and two runner-ups in the "What a Cure Means to Me" video contest.  The stories of three teenagers living with diabetes that hit home almost as hard as having a child with diabetes myself.  It was a tough act to follow, but it was followed by Dr. Sylvie Lesage, a JDRF-funded researcher who has been working on diabetes since her post-doctoral days in Australia.  A Canadian born fundamental researcher, Dr. Lesage has been conducting research using Non-Obese Diabetic, or NOD, mice.  These mice not only present diabetes in a manner extremely similar to humans, they also do so with an incidence rate of about 90% within 26 weeks.  Through the work of her and her team, a deficiency in a specific enzyme and correlating deficiency in double-negative T cells was identified.  The DN T cells, we were told, are an immune system regulatory cell that helps to detect and eliminate rogue T cells.  The team cultured and injected new-born NOD mice with the DN T cells and the incidence rate dropped to about 9% and the onset was later in the subjects life-cycle.  Although this does not directly mean an "off-switch" in humans, it is an incredible proof of concept leading into yet another potential avenue for prevention prior to onset as well as protection for new or regenerated cells and would seem to lend itself well to complimenting other advancements in cures.

   Our final speaker of the day was someone I would call an expert in diabetes, in living with diabetes.  Deborah Sissmore was diagnosed at age 4 (yeah, that hit home) and as she grew up never let the disease interfere with her life.  She had what some refer to though as "brittle diabetes", and without the benefit of today's technology, managed the disease somewhat blindly with urine tests and dose updates only every few months.  26 years later, after earning three degrees, becoming an elementary school teacher, and getting married, she quickly lost her sight.  As she spoke to us, 17 years after losing her sight, she delivered a powerfully positive message of overcoming the demons of this disease to lead a full and rich life.  Debbie also spoke to us about a rare opportunity she was afforded in 2003.  On Christmas eve, she received a phone call she was waiting for since she became one of 300 participants worldwide in an experimental islet cell transplant program and on Christmas day received her first of two infusions of donor islet cells.  Almost seven years later she stood before us, telling her story, and all the while insulin was being produced inside her body.  I couldn't help but remember that this uniquely up-beat and outgoing woman was one of the hardest hit casualties of this disease, but at the same time she was a brilliant reminder that there is more to life and adversity can be overcome.  Thankfully, the incidence rate of such complications have dropped dramatically in the past years and our children have the benefit of the tools and treatments that have been developed largely by the support of our global community.
   While the rest of the day was quite enjoyable and full, our guest speakers were by far the highlight… and the karaoke of that evening is again irrelevant to the subject.

Saturday was a half day of workshops.  Unfortunately there were many running in parallel, so I chose the two that were most relevant to me - Walk and Outreach.  It was a wonderful opportunity to gather with volunteers and JDRF employees and discuss our challenges and successes in each of these areas.  The great thing about it was while there was a lot of commonality, there was also a lot of diversity as well and I picked up a few great ideas that I want to incorporate into our activities here locally.  While the Walk has already been walked for 2010, there is still a lot to do and even more to get ready for Walk 2011.  I am also really excited to be joining the Outreach committee in the coming weeks as we develop our program and roll out initiatives in peer support, community development, and school development.

   I think the best Father's Day gift I got this past week was the time to participate in this amazing conference.  I am so grateful to my wife for letting me skip town for 4 days and taking on herself everything at home, which I know is not easy at all.  Yes the house was a disaster and yes we were all tired and worn out, but everybody made it through and even Jonathan's numbers were incredible.  Hopefully I'll get to go next year as well and we'll have some even greater news.

   For those of you who patiently made your're way to the end of this post... Yes I did consider holding out on you and making you wait two weeks to hear, but instead I'll tell you what we'll be doing two weeks from today.  It's not the ultimate solution, but I'm more confident than ever that it is a right step.  Two weeks from today we have an appointment with the clinic - to get ready to pump!