T1D Insider - JDRF Canada

Issue 9 | March 2013 JDRF Canada | jdrf.ca | 1.877.CURE.533

T1D Insider inspiring event. Our Living Proof Champions had over 40 meetings with Members of Parliament and Senators with a focus to seek additional Federal funding for T1D research as well as increase awareness, educate and put a personal face to the disease. Through this event, JDRF was able to identify new champions on Parliament Hill to help increase awareness for T1D and JDRF.

Prime Minister Stephen Harper meets with Living Proof Champions.

Kids for a Cure Day Inspirational kids from across Canada descend on Parliament Hill to advocate for expanded clinical trial network for diabetes research. On November 27, 40 inspirational Canadian children between the ages of two and 16 living with type 1 diabetes (T1D) traveled to Ottawa with their families and met with Members of Parliament and Senators as part of JDRF’s Kids for a Cure Day.

These 40 Living Proof Champions discussed the challenges they face living with T1D and the importance of expanding the JDRF Canadian Clinical Trial Network (JDRF CCTN) across Canada. Kids for a Cure was an action packed

“Kids for a Cure gave me the opportunity to visit Parliament Hill and meet with Members of Parliament to seek their support to expand JDRF CCTN across the country. As a Manitoban, additional funding for JDRF CCTN means I may have an opportunity to participate in a trial.” —Makyla, Living Proof Champion, Winnipeg, Manitoba. Thank you to our 40 JDRF Living Proof Champions and their families for making this such a successful and inspirational experience. JDRF would also like to thank Eli Lilly Canada Inc. for their support in our Kids for a Cure event. n

Enter to Win our 5th Annual JDRF Youth Video Contest!

T1D Insider is Going Digital

Kernels gift certificates, you have until We've heard about your athletic the extended deadline of midnight accomplishments, academic on Monday, April 15, 2013 to achievements, creative create and submit your video. genius, and passionate Educate others about aspirations. We know 5th Annual JDRF living with T1D and you're eager to show Youth Video Contest share your journey how you're achieving to achieving your your dreams despite dreams. We would fighting against T1D, like to thank our and we want to share corporate partner your triumphs with Kernels for their everyone! This year’s support through theme is: My Diabetes promotion and prizes Journey. If you want to share for this contest. To enter your video, your diabetes story and have a please visit jdrf.ca/videocontest. n chance to win great Apple® prizes and

JDRF is bringing you important information in an exciting new format. The October 2013 edition of the T1D Insider will be available online at jdrf.ca. Published every March and October the T1D Insider will include a collection of exciting updates, photos, and videos. It will also be available for download. JDRF is proud to be going green, putting even more money towards T1D research. Visit jdrf.ca/newsletter to sign up for your own copy today. n

T1D Insider

Diabetes, hope, and clinical research James Shapiro, MD PhD FRS (Canada) Professor of Surgery, Director Clinical Islet Program, University of Alberta This is an incredible time of hope and promise for patients with T1D. As a scientist and clinician, I have never been more excited and convinced that progress is ramping up exponentially. The year 2013 represents a real turning point. Worldwide, 1,100 patients have received islet transplants since we began our first tests with the Edmonton Protocol, and we have all learned a lot over this time. Several sites including our own, are now reporting five-year insulin independence rates of over 50%. These results match those of whole pancreas transplants, but without the major surgery or risk. Antirejection drugs have become much safer, and side-effects have been minimized. It is now likely that the risks of diabetes are at least equivalent to these risks, and we can anticipate moving our transplants earlier in the course of diabetes, at a time where we can not only stabilize but even prevent secondary diabetes-related complications. In Edmonton, we did 66 islet transplants last year, which is a world record for a single centre. Once just a curiosity, this treatment is changing lives for patients with difficult to control diabetes, and it is now the safest of any of the organ transplants. So, what’s next? We have already begun a trial with Sernova (London, Ontario) to explore a new device for islet transplants beneath the skin. We are planning a first-in-human trial next year with insulin producing stem cells from ViaCyte. If that works, it could provide enough cells to treat every patient with diabetes. For new-onset patients, we have a large collaboration planned to use patients own stem cells to repair the pancreas and reset the immune system, without need for long-term immune suppression – if these trials work, at last a tangible cure would be within our grasp. JDRF Canada now has the drive, vision and skill to orchestrate these new trials that will certainly be gamechanging for patients. This scale of research cannot happen without major funding. These trials are happening in patients, not in mice, and through the JDRF scientific family, international collaborations and continual refinements in these exciting protocols is sure to take us to a point we could never have dreamed of previously.

Photo courtesy of Blackbird Photography.

Thank you JDRF for your mission, your incredible support, and for keeping us patient (children and adults) focused. Together we will make a difference. n

WB Family Foundation - $3 million Gift to Cure T1D JDRF has recently been the recipient of a $3 million gift from the WB Family Foundation to fund research for T1D. This gift will be used to focus on finding a cure for T1D and begin to broaden the JDRF CCTN established in 2009, in partnership with the Government of Canada. JDRF CCTN was established to accelerate the testing of new technologies and treatments for Canadians and individuals around the world living with T1D and its complications. JDRF CCTN has launched nine clinical trials in its first phase as well as two Research and Development projects all within southern Ontario. The WB Family Foundation gift will allow additional researchers to submit applications to become a part of JDRF CCTN to further develop research into the cure therapeutic area: restoring a person’s insulin-producing capability and halting or reversing the body’s misguided immune attack on the pancreas. JDRF’s therapeutic areas are a bold step in our promise to move the diabetes research landscape towards a cure as soon as possible. It is based on the progress and success of research over the past four decades in uncovering the most promising pathways to a cure. Globally, JDRF is funding more than 50 human clinical trials, several of which

are in the advanced stages of clinical testing needed before FDA approvals are required. At the beginning of the decade we only funded five human clinical trials. This increasing number of human clinical trials JDRF is now funding indicates that the pace of research is accelerating. The partnership with the WB Family Foundation will provide JDRF CCTN the opportunity to further develop its network of researchers and encourage collaboration with existing clinical trials. JDRF is making real progress in research, and is committed to developing new and better treatments that improve the lives of people with T1D in the near term, and keep them healthy while we advance toward a cure. Join the WB Family Foundation and help fund crucial research to find a cure for T1D, donate today at jdrf.ca/curetrials. n

route in one of the most beautiful destinations globally for cycling and that is the Dolomites in Northern Italy,” said Rady. The 40 cyclists from JDRF affiliate locations including Australia, Canada, the United Kingdom, and the United States must raise a minimum of $5,500 to enter and each cyclist’s funds will support the JDRF affiliate of their country of residence.

culminate in a 130 km challenge on the final day, raising crucial funds to continue to drive research efforts to find a cure for T1D and its complications.

“The JDRF Global Cycle Challenge is going to be the adventure of a lifetime. If you have a passion for cycling, or a real commitment to funding research for type 1 diabetes, then this is going to be an adventure you’ll never forget,” said Rady. “We are really excited about the opportunity that it creates and so far the enthusiasm and passion has been fantastic from the people who want to get involved.”

Matthew Rady, Head of Banking and Financial Services for the Macquarie Group in North America has been spearheading Canadian participation since the launch of the event. “We thought we’d try and get about 40 people with a real enthusiasm and passion for cycling, and provide a

The 2013 fundraising goal is $500,000, and with the profound response to this event, we know that it is within reach. If you’d like more information on this exciting adventure, or would like to donate to one of the participating cyclists, visit jdrf.ca/globalcyclechallenge. n

Cycling the Alpe D'Huez in the first Global Cycle Challenge.

JDRF Global Challenge: The Ultimate Experience! In 2011, cyclists conquered the Alpe D’Huez in France in the inaugural Global Cycle Challenge in support of JDRF. These riders raised an amazing $400,000 in support of T1D research. The JDRF Global Cycle Challenge is back again for 2013! On July 4-8, 2013, the JDRF Global Challenge will be taking place in the mountains of the Dolomites tackling some of the most famous climbs in Northern Italy. The three day cycling spectacular will

T1D Insider 2013 Diabetes Research Symposiums Are you looking for updates on JDRF-funded research? Do you want to hear inspiring and motivational stories from a Diabetes Champion? JDRF is committed to developing new and better treatments that improve the lives of people with T1D in the near term, and keep them healthy while we advance toward a cure. You’re invited to the 2013 Diabetes Research Symposiums, an evening to further your knowledge on diabetes research, interact with a diabetes champion and experience the latest and greatest products on the market for diabetes management.

Chloe Vance, founder of Connected in Motion, is one of the many inspirational speakers presenting at this year's symposiums. Photo courtesy of Jen Hanson.

JDRF strategically partners with industry, governments, foundations, academia, and clinicians to ensure that JDRF and its partners are aligned and working toward a common goal of curing, treating, and preventing T1D. Special thanks to our national sponsors Bayer and Medtronic for their continued support of this JDRF event. Contact your local chapter office for details of the Diabetes Research Symposium near you. jdrf.ca/symposiums. n

Ride stationary. Move research forward. If making a difference in the lives of others is important to you, then put the JDRF Ride for Diabetes Research on your calendar. This event is a high-energy stationary ride that brings together business leaders and employees from across Canada. Join with four others to register your team. Registering online is easy. Recruit your team, raise funds… and Ride!

Our Riders speak: “Not only are you building a great employee experience because the energy is unbelievable but it’s also for a great cause.” —Monique. “It’s completely crazy and that’s a really good way to spend time with corporate Canada.” —Matt. “The money that we're raising today at Rides across the country will help us meet our objective of finding a cure for T1D.” —Bryan.

The 22 Ride events in 2012 raised over $7.5 million, involved more than 23,500 Riders representing over 370 companies across Canada. It is the place to be when it comes to spending time raising funds on a stationary bike. Get out of the office and join us for the JDRF Ride for Diabetes Research and help JDRF reach its 2013 Ride fundraising goal of $7.7 million! To register your team, go to jdrf.ca/ride, or for more information, call 1-877-CURE-533. n

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JDRF Youth Ambassador, Eric, kicks off the Ride for Diabetes Research in Ottawa.

for Diabetes Research

T1D Can Conquer the Sahara

Sahara Race 2012 – 7 days, 250 kms, self-supported.

Sébastien Sasseville is a 33-year-old Quebec City resident, diagnosed with T1D in 2002. Despite his diagnosis, he didn’t let diabetes slow him down in achieving major life accomplishments. In 2008, he became the first Canadian with T1D to reach the summit of Mount Everest. He documented his sevenday race through a personal journal where he kept track not only of the adventure, but the challenges in managing his diabetes through the climb. “October 28, 2012. First day of the seven-day race. A long, hard and humbling day!” said Sébastien. “The heat was intense, over 36°C on the Sahara desert course. I kept my insulin cool with gel packs and thermal containers. Things went well, but my diabetes was a challenge. I was forced to walk the last 5 km. I will make a few adjustments to my strategy tomorrow.” Now, people may wonder why Sébastien even considered taking part in the race to begin with. Doesn’t he have enough challenges living with T1D on a normal day? Why would he put himself through a 250-km, 7-day footrace in the Sahara desert with

temperatures rising to 40 degrees Celsius? Why would he want to live through what Time Magazine described as one of the ten most difficult endurance challenges in the world? Extreme measures aside, Sébastien was motivated by the desire to challenge himself and confront his fears of the unknown, just like he did when he climbed the summit of Mount Everest in 2008. “I also used the race as an opportunity to create awareness about T1D on behalf of JDRF during Diabetes Awareness Month, held each November.” said Sébastien, “I wanted to let those like me know that T1D can be an enabler. It can be an ally. Inspiring us and helping us grow.” “November 2, 2012. Last official day of the race. I ran the first 40 kms with no major issues. My diabetes was well controlled as I responded to nutrition and exercise in line with my usual patterns. Later, the day was marked by two costly high blood sugars. The first happened at the worst possible time — the hottest point in the day with temperatures exceeding 40°C. After getting a full

meal at the 50 km marker, I ran the fastest 20 kms of the week, impressive considering I already had 220 km in me! I was in 16th position, but around 80 kms, I made a few blood glucose management mistakes that led to another high blood sugar episode, ultimately forcing me to slow my pace. I crossed the finish line in 21st position out of 134 runners (18 had dropped out). Even if I could have finished on a stronger note, I was thrilled to complete the event’s toughest and longest stage.” The race was very demanding, both physically and mentally for Sébastien. Through the duration of the race he lost 14 pounds and drank 60 litres of water! Managing his diabetes was a constant challenge through the course of the race, but it didn’t stop him from achieving his goal. Now that he has completed the race, he is convinced that although diabetes can be very serious, it won’t be a barrier to him living his life to the fullest. “We can transform obstacles into catalysts,” said Sébastien, “making our boldest dreams come true.” He is living proof that anyone can be a diabetes champion and overcome the obstacles that stand in the path of their dreams. n

T1D Insider all of the other people who have dedicated themselves to training and fundraising to support the cause. 3. What is it like riding such long distances with T1D? Are there any special considerations to take in mind? • It can be challenging but very doable. Having a CGM (Continuous Glucose Monitor) has helped tremendously. It is a matter of testing regularly, stopping when you need to test or eat, and as we stress in the Riding With Diabetes seminar we hold at each Ride, it’s all about listening to others and not being stubborn or pushing yourself too hard. 4. What advice would you give others who might be interested in joining a Ride? • Do it! You will have the experience of a lifetime and be back year after year as I am.

Lorne Shiff – JDRF Ambassador With National Volunteer Week just weeks away, JDRF would like to recognize the valuable contributions of long-time volunteer and T1D advocate, Lorne Shiff. Lorne has been a member of the JDRF family his entire life; his parents, Helaine and Allan Shiff, helped establish JDRF Canada back in 1974 shortly after Lorne was diagnosed with T1D. He is a valued member of the JDRF Board of Directors, a proud father, and a true T1D advocate. This year, he is gearing up once again to take part in JDRF International’s Ride to Cure Diabetes. Here, he shares his experience participating in these exciting events and lets you know how you can get involved. 1. How long have you been participating in JDRF International’s Ride to Cure Diabetes? • I participated in my first Ride To Cure Diabetes in 2005 so this will be year nine. 2. Why do you participate in the Rides every year? • I participate for many reasons. One is the amazing experience I have each time I prepare for a 2.5 day Ride weekend and the great feeling I get from participating with

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5. Is there a fundraising minimum? • The minimum fundraising amount is $5,000 per Rider. This may seem like a lot however if you think about this as an all-expenses paid bike trip including air transportation, food, lodging and an over-the-top supported Ride, it is a bargain. 6. What is your fundraising goal this year? • My goal is to raise $25,000 for JDRF this year. 7. Do I have to be very fit to participate? Well, very fit is a relative term. You certainly have to train a lot. 8. How can others get involved? • Visit jdrf.ca/ridetocurediabetes and register today. 9. What advice would you give others living with T1D? • Be as active and fit as possible which for me I believe has helped me live for close to 43 years now with T1D with few complications. Be positive. Get involved with JDRF and help raise more money to fund research to improve the lives of all those living with T1D. Check out more of Lorne’s story at jdrf.ca/blog. n

New Adult T1D Toolkit Available

The Adult T1D Toolkit, a resource for the newly diagnosed adult is now available on the JDRF website. This tool not only discusses diagnosis and management of T1D, but also the psychological impact and feelings that come with the disease, perhaps the biggest long-term challenge you will face.

understand and feel comfortable with your diabetes, you will have less stress and be better able to manage your diabetes over the long term. Enjoy reading this new guide, use this toolkit as a resource, but most importantly know that there are people out there like you who have been in your shoes, who care for you and are fighting for a cure. Simply put, this is not a disease you have to go through alone.

T1D is a disease that requires you to take charge. Once you know,

To access this resource please visit jdrf.ca/adultswithT1D. n

the n i Jo unity m Com

Participants enjoying the weather at the TELUS Walk to Cure Diabetes.

TELUS Walk to Cure Diabetes – Join the Community! Sincere thanks to our dedicated individuals, families and organizations across Canada that raised over $7.7 million through the 2012 TELUS Walk to Cure Diabetes. This event continues to raise critical funds for research as we focus on curing, better treating and preventing T1D. On behalf of all that are touched by the disease, we remain humbled by your generosity. This year, the TELUS Walk has an ambitious goal of raising over $8 million. We recognize that accelerated research is dependent on increased support from our fundraising

events. By registering and raising funds (making a pledge to a raise the minimum suggested fundraising amount of $100 per participant), our community can be a critical part of the solution! Join the community by registering today at jdrf.ca/walk and be a part of something big – a national movement to fund incredible research into T1D. Choose from over 70 sites across Canada! A very special thanks to our title sponsor TELUS for their passionate commitment to our event and to their employees, friends and families that have given so much through their fundraising and participation. n

T1D Insider Follow JDRF Online For updates on T1D and JDRF activities, don’t forget to “Like” JDRF Canada on Facebook (facebook.com/JDRFCanada) and follow us on Twitter (@JDRF_Canada). Interested in learning more about JDRF CCTN? Visit our Facebook page (facebook.com/jdrfcctn) for updates and information. Don’t forget to read the stories from guest bloggers and JDRF staff members on JDRF’s blog (jdrf.ca/blog). Share your T1D story at [email protected] and you could be featured as a guest blogger. n

Meet Hailey JDRF is the leading global organization focused on T1D research. For us, it means striving to help people at all ages and all stages of the disease live better, longer, healthier lives while we work toward a cure. They are the reason JDRF exists, and remain at the forefront of everything we do.

play doctor with her dolls and even pretends to check their blood sugar and give them insulin shots. When Hailey gets older, she would like to be a lawyer or a doctor.

But we can’t do it without you.

Your continued support makes you a partner in JDRF’s important work. Together, we can work toward finding a cure for people like Hailey.

Meet Hailey. Diagnosed with T1D when she was 17 months old, Hailey loves to

Visit jdrf.ca/hailey to read her story and donate today. ■

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Share your T1D story at [email protected]

In this Issue: • Kids for a Cure Day • Enter to Win our 5th Annual JDRF Youth Video Contest! • T1D Insider is Going Digital • Diabetes, hope, and clinical research • WB Family Foundation - $3 million Gift to Cure T1D • JDRF Global Challenge: The Ultimate Experience! • 2013 Diabetes Research Symposiums • Ride stationary. Move research forward. • T1D Can Conquer the Sahara • Lorne Shiff – JDRF Ambassador • New Adult T1D Toolkit Available • TELUS Walk to Cure Diabetes – Join the Community! • Follow JDRF Online • Meet Hailey

We’d love your feedback on this issue or future story suggestions. Contact us to share your comments. If this publication was sent to you in error or you do not wish to receive it, please contact JDRF: JDRF Canada 2550 Victoria Park Avenue, Suite 800, Toronto, ON M2J 5A9 [email protected] | 1.877.CURE.533

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