Friday, June 28, 2013

JDRF AGM: Research & JDRF Canada Update

I already wrote about my opinions on seeing John Lipp speak about the importance of volunteers. I did promise to write about the research updates I got to soak up, as well as a blurb on the update of JDRF Canada. I understand this is a bit "after the fact" but I have been super busy trying to make my house look like a home :)

So, without further adieu!

Dr. Paul Fernyhough: Professor Pharmacology and Therapeutics, University of Manitoba

Image from the St. Bonifice Medical website
 Dr. Fernyhough spends his days looking at and understanding the progress of neuropathy. A lot of people with diabetes tend to not want to hear about the devastating outcomes of the disease, so this type of research update may not twinkle everyone's star like it did mine.

Firstly, Dr. Fernyhough is incredibly engaging, witty, and did not speak to the crowd like we were a bunch of idiots would could never understand his work. For that, I thank him.

Secondly: I thank him for dedicating his life on how to actually reverse, not just treat the symptoms of, diabetic peripheral neuropathy.

With the money JDRF Canada has granted him....he is very, very close to getting there.

The notes I have on this talk are pretty sparse because I was thoroughly engrossed in his slides. Like I said: he is very engaging. However, I can briefly go over what I learned because that has stuck with me.  50% of all people living with all types of diabetes have moderate to severe diagnosed neuropathy at some point in their lives. That is a staggering number. He mentioned when he was researching this, he found this to be incredibly high versus the number of PWDs who maintain "good to excellent" control of blood sugars, Throughout his research he has discovered that all patients with diabetes have a change in nerve fibres, and it is totally individually dependent on how far those changes progress and if they show symptoms.

I was awestruck. Yet another highly regarded and incredibly intelligent person telling me that if, I happen to end up dealing with neuropathy it isn't my fault. Paging all doctors and caregivers: give this a guy a call.

So, what's this guy going to do about it? Well he and his team have discovered that a gastric ulcer med called perenzipene corrects myopia. Not only that it reverses the loss of neurons, and heightens the sensitivity and feeling in nerve endings. Incredible. This drug which was used for something totally unrelated to nerve damage can make nerves re-grow. He said in his studies it has been used topically (on mice, be minnie) and the neuropathy had been 100% reversed within two months.

So yeah, mice...again. Why should we care. They have cured diabetes in mice. However, we should care because of two things: 1) the product is already available for prescription and 2) it is used topically. These are two HUGE hurdles that researchers can come across when trying to get things passed in Health Canada (the Canadian equivalent of the FDA for my American readers.) So it's non-invasive and people are using it right now. It's all about marketing his research properly through his company he has formed and gaining interest from the pharma companies. It's not often I truly feel hopeful after a research update (which you are about to find out as I move on with my intake updates) but this guy really has me hoping.

Dr. Bruce Perkins: Associate Professor and Endocrinologist at the University of Toronto. A Diabetes Clinician Scientist.

Image from

Ok. So I admit I was totally excited to hear Dr. Perkins speak. He directed the formation of the insulin pump program at the UHN, he is a T1 PWD himself, he is part of the artificial pancreas project! I was hoping to hear about the AP and all of its glory from him.

Admittedly I was a little disappointed. He spoke about his other major research which is a predictive marker and tool to screen and measure neuropathy. After hearing the previous research update, I definitely didn't want to hear about  further screening, because I was feeling so hopeful about it being a complication of the past!

Either way, Dr Perkins updated the group on something called a corneal scan. This scan shows nerve damage on the cornea which can predict neuropathy progression throughout the body. This may, in the future, prevent people from feeling the pain of neuropathy. (side note: dear blogger: neuropathy is not homeopathy, stop trying to spell check that!) This development of his is a painless eye scan much like we already get at the ophthalmologist, and he is working on getting them in clinics nation-wide.

Dr. Perkins also is heading a really interesting study on longevity in diabetes. He is funded by JDRF for studying and learning things about people who have lived 50+ years with diabetes. You can see his brand spankin new website at:

He spoke very briefly about his work on the AP project and that made me sad. I am more hopeful that the AP will be available to me than actually ever being cured so I just will leave it at that.

Dr Susan Kirsch- Pediatric Endocrinologist

Dr. Kirsh updated the audience about the importance of bg testing, CGM use and how the Minimed pump is a step towards the AP. She updated things that I really, really already knew so, admittedly, I tuned out a little bit. Not because what she was saying isn't important, but because she was discussing things that I live every day. I am grateful someone like Dr. Kirsh could pass on this important information to those in the audience who do not live with diabetes every day. She did discuss the barriers in CGM usage....and as she discussed that my Dexcom alarmed for me to treat a low. I snuck out of the room and face dived into a bowl of fruit.

Andrew McKee, CEO-JDRF Canada Update

Image from

Andrew's update was long and very interesting. As someone who puts all of my donated volunteer hours into JDRF Canada it was great to hear about the state of the foundation. There were a lot of financials discussed and that's all really important to me, but not necessarily important to my readers.

Here's what I think is important to pass on: the reasons why those numbers are so important. He talked about what JDRF funds and why the foundation funds the projects it does. These are the reasons why I switched my volunteering from the Canadian Diabetes Association to JDRF.

The JDRF has primary research goals: Cure, Treat, Prevent (in that order) Type One Diabetes.

Cure: The JDRF funded projects that are currently working on a cure for type one diabetes are focused on immune therapies and beta cell therapies.

Treat: The JDRF funded projects that are currently working on better treatments are complication therapies (like the first update) and glucose control therapies (such as the AP)

Prevent: The JDRF is funded projects that are currently looking into preventing type one diabetes are vaccine therapies and further researching the effect gut flora has on triggering the auto immune response in T1D.

So what I took away from Mr. McKee was something I never knew before. There is something during the research process called The Valley of Death. It's the stage between the initial projects and when the pharmaceutical companies pick up funding the projects. I learned that in  this valley a lot of really important research gets lost. JDRF funds promising projects to trudge through this period in the development and research. Once a project can get past this stage, the pharmaceutical companies usually pick up and fund the final laps before it goes through approval stages in Health Canada.

So there you have it. My second of three posts about the AGM. I am still trying to get a quick interview with someone truly inspirational I saw speak. Stay tuned!

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