Announcing the new JDRF – Beyond Type 1 Alliance

September 25, 2019

 

 

On September 24, 2019 we announced an exciting new alliance with Beyond Type 1, aimed at getting more information, more resources and more support to our type 1 diabetes (T1D) community. 

This is an innovative partnership, based on a shared objective of supporting the people and families impacted by T1D with accelerated Research, Advocacy and Community Engagement.  

JDRF brings to the Alliance, Research expertise, as well as a respected and trusted Advocacy voice, and a solid, supportive network of Community Engagement resources and programs.  

Beyond Type 1 reaches more than 1 million people with personal story telling, online programs and outreach. 

By working together, we know that we can do more, better, faster, more efficiently to:   

  • Engage more T1D community members by leveraging and developing mutual materials and programs with increased efficiency and impact 
  • Accelerate research support and advocacy efforts by better engaging and educating the T1D community  
  • Increase the diversity of the T1D Community we are reaching through new, joint outreach efforts 

“Collaboration is often just a buzzword,” said David Panzirer, a Trustee at the Helmsley Charitable Trust.  

“Today, this joining of forces is both a meaningful and powerful advance for the T1D community as two leading organizations forge a true partnership that plays to their respective strengths and increases their ability to focus on what each does best.”  

We agree. And we look forward to sharing updates on how this alliance is helping us to do more for everyone JDRF supports.  

Read the full media release here.   

Not my identity

September 25, 2019

 

Written by: Rylee Hauger, lives with type 1 diabetes

I wake up to my alarm going off. I roll over and check my phone, “12:00 am blood sugar test,” I sigh and grab my test kit. Just another day in the life.  After pricking my finger, I watch the blood fill the test strip, awaiting the infamous countdown that appears on the screen. I feel fine, I don’t feel high nor low; I say a silent prayer that my blood sugar will read in range. “5.6” reads the tiny screen, “Thank goodness.” I whisper to myself before pulling the blankets back over me and falling back asleep. My blood sugar is fine, I’ll test again in the morning before school.

 I wake up again, this time not to my alarm. My bed sheets are soaked in sweat, my hands are shaking, and I feel a familiar pit in my stomach. I know what is coming as I get out of bed to grab my test kit for the second time tonight. “2.9” reads the stupid screen. I want to throw it against the wall. How am I low? I was fine 3 hours ago when I last tested. I grab a snack and treat my low. I wait fifteen minutes before testing again, “3.1” the meter tells me. I roll my eyes and go grab another snack before returning to my room to complete it and wait this hypoglycemic out. I just want to go to bed. It is now just about four in the morning and my blood sugar has finally risen enough that I feel fine to go back to bed.

I get out of bed after pressing snooze twice. It is now quarter to eight and I need to get ready for school. Once I am up and out of bed something doesn’t feel right. I run to my messy bathroom and empty last night’s dinner into the toilet. I know what this means. After getting myself cleaned up I walk out of the washroom and back into my bedroom where I test my blood sugar. “19.1” I slam the meter onto the floor. I feel like crying. After I give myself a few units of insulin I return to my morning routine then head out the door. Considering this morning’s events and the fact that I shouldn’t have been driving with blood sugar like that, I’m surprised that I made it to school in a timely manner. I grab my books and head to my first class feeling like today is going to suck. “You look like hell,” laughs my best friend Tessa.

“Don’t even start.” I warn her, meaning it.  “What’s wrong Remy?” she asks sincerely. “I was low all night then woke up crazy high this morning.” “You poor thing, anything I can do?” Tessa is the most caring person I have ever met; I wish I could be more like her. “Oh, just trade me pancreas’ please?”. “You know I would if I could Rem.” I know she means this.

I barely make it out of my first class without falling asleep. It isn’t overly boring, I am just so exhausted from last night. I get through the rest of my school day, just one more class, and I am on my way home. I make it home around noon. My blood sugar is fine, so I make and eat lunch. I have volleyball practice tonight at 7pm so I have a few hours to relax before I must leave.

Once I arrive at practice, I put my shoes and knee pads on, then test my blood sugar one last time before I start. “12.9” my device tells me. “Okay that’s not bad, I am a little high, but I’ll be sure to give myself a little extra insulin and just work extra hard.” I quietly tell myself.

Practice starts and goes by smoothly; my coach tells us to go grab some water, so I take that as a chance to test my blood sugar again. “2.7”. Today has been a rollercoaster. I had been doing so well lately too and it is so defeating to have a day like this when you think things have been going well. “Hey Coach, I’m a little low I need to sit out for a few minutes.” I tell him.

“Yeah, whatever, okay sit down.” He dismisses me rudely.

I react to his comment by doing as I am told. Crap, they are about to do “ten up” as my coach likes to call it, the most physically draining drill you could imagine. I know what this looks like, “I cannot believe that Remy gets to sit out for this just because she has diabetes,” I hear Emily whisper. “I know,” starts Sasha with an eye roll, “so convenient, hey? We start conditioning and she is suddenly low? Sounds like a load to me, I’m sure she is just faking.” Ouch, that one hurt. I miss the whole drill but can finish the last forty minutes of practice.

On my drive home from practice I cannot help but start to tear up. Today has got to be one for the books. As if I didn’t have a horrible enough time last night, the day didn’t get any better and the comments from my peers are as worse as ever. As I pull up onto my driveway, I slam my hands on my steering wheel, setting off the horn and possibly waking up my neighbours. I couldn’t care less,I have had a horrible day and just want to give up. “Why me?” I yell looking up at the sky through my sunroof as if I’m asking God. I pull myself together, walk up the steps to my front door, and as I enter the house I am faced by my mother. Her features soften as she can tell I’ve been crying, “What’s going on? How was practice?”.

“How was practice?” I scoff. “Practice was a walk in the park compared to the day I’ve had.”

I recount the day I’ve had and tell her truthfully about every detail,

“Why didn’t you tell me any of this earlier Rem? I would’ve done anything I could’ve to help,” she asks me. “I just didn’t want you to have to worry about your silly diabetic daughter being dramatic,” I say with a strained voice. “Rem,” she starts quietly “You’re not my diabetic daughter.” she tells me using air quotations over the nickname. “What do you mean? Yes, I am,” I challenge.

“You don’t get it do you?” she asks, and I shake my head. “You have diabetes, you aren’t diabetes.” she tells me.

 “You’re not my diabetic daughter” she tells me. “You are my strong, and brave and passionate daughter, diabetes is a part of your story Rem, it isn’t your identity.” she says calmly.

 “What I am trying to say is that your story is not your identity. Your story is what adds to your identity, it helps build it. For you Rem, your story is that you’re currently a teenage girl with type 1 diabetes. But that’s not who you are. You are strong, funny, clever, and beautiful,” she responds.

“I guess, but it is just so hard to go through this. When I am not thinking about all of the high school stress I am going through I am thinking about the fact that I am always going to be the odd man out because of this disease,” I cry. “It’s hard to go out and have a normal teenage life when I always have needles and an apple juice in my back pocket. I wasn’t allowed to have sleepovers with my friends until I was 12 and knew how to administer shots myself, I can’t go out and party with my friends because what if something happens and nobody knows how to handle it? I have an increased chance of going blind or having depression. Hell Mom, I know I am going to die before all of my friends.”

“I know that it is hard, and I cannot begin to imagine what that feels like. But everybody goes through something in their life. This is just what you have to face. I know it’s hard and can be unbearable, but I also know that you are so strong. Take things one day at a time, celebrate the good days and don’t hang your head on the bad ones. You can let this get to you, or you can battle through this and live your life. I cannot make you do anything, but just listen to me when I tell you that there is more to you than this disease,” she tells me with tears in her eyes.

I go to bed that night, feeling better. I need to change my attitude – I know that the bad days suck, but I need to move one day at a time. I fall asleep that night with my head high. I know that I will be okay.

I wake up to my alarm ringing, “12:00 am blood sugar test.” I roll my eyes, “Here we go again.” I chuckle lightly to myself.

The Garfinkle Family Leadership Gift

September 25, 2019

“Our story is the story of parents fighting for their kids.”
Jimmy Garfinkle

In 1971 and 1973, Krayna Golfman and Mitch Garfinkle’s lives changed dramatically when their sons, David and Jimmy, were diagnosed with type 1 diabetes (T1D). Along with other families living with the disease, they embarked on a lifelong mission to find a cure. Thus began the journey that led to the founding of JDRF Canada.

Twenty-three years later, T1D knocked at their door once again. This time, the Garfinkle’s nine-year-old grandson, Alex, learned he had the disease. The news was devastating, and they could not bear the thought of Alex going through life with this challenging health condition they knew only too well. History was repeating itself and the Garfinkle Family rallied to protect him from this relentless disease. This was the catalyst that energized the family and renewed their leadership as stalwart champions of JDRF.

Through the years, the unwavering commitment of The Garfinkle Family helped JDRF push the boundaries and make incredible progress. Among their significant contributions, Jimmy, David and business partner, Irving Granovsky, were the first to support JDRF’s In Our Lifetime campaign in Eastern Canada, with Jimmy serving as head of the campaign.

As the campaign draws to a close, the family is choosing once again to lead by example through a transformational gift that will cover the costs from September to December. In doing so, they will allow us to direct 100% of all gifts to JDRF’s mission. This extraordinary gesture undoubtedly builds on the Garfinkle Family’s legacy as a JDRF trailblazer devoted to creating a world without T1D.

Thank you for your tremendous generosity, Jimmy and family! We are so grateful for your lifetime contribution to JDRF.

Living with type 1 diabetes: Reflections on Flexibility of Insulin Dosing

Sponsored Content by Sanofi

 

"Just because my pancreas is faulty, doesn’t mean my taste buds are," observes Paula, a Toronto Health healthcare professional living with type 1 diabetes. "Sometimes I’ll be walking down the sidewalk with no intention of straying from my normal diet only to get attacked by warm whiffs of freshly baked bread that escape from the bakery and convince me to enter."

Paula is taking a long-acting and a rapid-acting insulin. As her situation illustrates, using a rapid-acting insulin with a broad administration window can have important practical benefits. The rapid-acting insulin that Paula is taking  can be given within 15 minutes before or within 20 minutes after starting a meal.  This flexibility gives Paula greater confidence that she can inject her insulin on her own schedule rather than having her diabetes and its treatment dictating her schedule.

Paula says that this flexibility for timing the dosing around meals has helped her out on many occasions. "Like anyone else, my day can be reshuffled so that I only have the next 30 minutes to eat my lunch. Or sometimes my lunch order doesn’t come as quickly as anticipated," Paula says. "Or maybe my friends are in the area and want to go for a walk—or a dessert. Having a larger window of time to take my insulin makes it easier to go with the flow and gives me flexibility in when to inject my insulin."  Since I’m able to inject before or after a meal, I am more confident to be more spontaneous in terms of activities with my friends or family."

"Diabetes is part of my life, and I’ve made many adjustments to manage my blood sugar," Paula says. "When you get it all figured out, it becomes part of the routine. My whole life doesn’t revolve around the disease."

Canadian Institutes of Health Research (CIHR) and JDRF join forces to accelerate breakthroughs in stem cell-based research

September 18, 2019 

Stem cell-based research has the potential to play a key role in developing a cure for type 1 diabetes (T1D). JDRF Canada is delighted to partner with the Canadian Institutes of Health Research (CIHR) Institute of Nutrition, Metabolism and Diabetes to announce a new funding opportunity that will see $6M awarded to investigators driving stem cell-based therapies for T1D. This funding opportunity is part of JDRF and CIHR’s ongoing Partnership to Defeat Diabetes first announced in 2017.

This tremendous initiative – to be launched in November of this year – is intended to bring together two Canadian research teams with extensive diversity of expertise and a joint structure that goes beyond conventional academic collaborations. The focus of the research will be on expanding, and translating to the clinical trial stage, strategies for delivery and protection of a stem cell-based treatment for T1D.

JDRF has supported T1D-related stem cell research for more than a decade, and today critical knowledge and advances from earlier studies are being applied to develop novel T1D therapies unlike anything currently available. “Stem cell-based therapies are aimed at curing disease and not merely managing its symptoms,” says  Dr. Sarah Linklater, chief scientific officer at JDRF Canada. “The goal of stem cell-based research for T1D is to build on the success of islet transplantation and make beta cell replacement accessible to all people living with T1D. Studies have now shown that stem cells – a renewable cell source – can be used to grow beta cells with the potential to cure T1D , so this goal is now closer than ever before.”

This initiative is intended to capitalize on Canada’s recognized excellence and leadership in areas such as clinical islet transplantation, stem cell biology, diabetes research, immunology, genetic engineering, and cell encapsulation research to overcome the challenges in making a stem cell-based cure for T1D a reality. It will provide grants to two ambitious Canadian teams each aiming to bring stem cell-based approaches for T1D to the clinical trial stage within the next five years.

For more information, visit www.cihr-irsc.gc.ca/e/51687.html.

For more informative articles on health and type 1 diabetes, visit our JDRF Blog. 

ViaCyte Inc. Edmonton site currently recruiting

November 26, 2019

 

ViaCyte Inc., a privately held regenerative medicine company, is seeking residents of Alberta to participate in a promising JDRF-funded clinical trial in Edmonton. The purpose of this research is to determine the safety, tolerability and efficacy of PEC-Direct™ (also known as VC-02), an investigational therapy that may provide blood glucose control in a similar manner to what a “replacement pancreas” would do by producing insulin after it is surgically placed.

Eligible recruits include men and women who cannot have children between 18 and 65 years old who have lived with type 1 diabetes (T1D) for a minimum of five years. They must also have hypoglycemia unawareness and/or glucose variability yet be free of other diabetes complications. The study will last approximately two years, with participants visiting the clinic for about 18 visits during that period. 

The goal is to develop a therapy that can free patients with T1D from long-term insulin dependence (i.e., no insulin injections or insulin pumps needed).

Should you be interested in learning more, please contact the study director to discuss next steps:

Tel.: 780-492-2709

Email: citp@ualberta.ca

Working together to cure type 1

September 11, 2019

Mirella and Isabella at the 2018 Ride

The first few months after Mirella Gallo’s 11-year-old daughter, Isabella, received a type 1 diabetes (T1D) diagnosis were very hard for her. “We were in shock and had no idea what it meant for her or our family”. With the support of Isabella’s nurses and doctors, the family learned how T1D would impact her day-to-day routine and her future. “We came to the realization that my daughter’s life would never be the same and that until a cure was found, she would be insulin dependent,” says Mirella.

Managing type 1 diabetes can be an isolating experience for everyone involved, but a supportive family can help alleviate these feelings, and the Gallos saw their family come together at the York Region Sun Life Ride to Defeat Diabetes for JDRF.

“When I was made aware of the event and how funds raised can help support research for type 1 diabetes, I immediately knew that I needed to do my part,” says Mirella. It took no time at all for Maurizio Marini, Mirella’s brother, to join in the fight for a cure.“[Isabella’s diagnosis] played a large part in my desire to take a leadership role for the Ride.”

But Maurizio and Mirella’s leadership at Ride did not stop at their immediate families. Mirella, a Confidence Coaching Manager at TD became Team Lead for the company’s involvement at the event while Maurizio, RBC Regional Vice President, became Team Lead for RBC. By sharing their stories with their colleagues and becoming internal champions for the type 1 diabetes community, they both saw their corporate families look past industry competition to come together, raise critical funds for T1D research and pedal for a cure.

Having two of Canada’s top banks come together is humbling for Mirella, and both she and Maurizio are proud to be part of organizations that support JDRF by attending the Ride. But it’s more than just riding, they say. Raising money is the ultimate goal and successfully doing so starts with a donation. “By personally donating, we lead by example. Every year, I have kicked it off by donating to my own Ride,” says Mirella. Maurizio agrees, adding “it inspires those we ask to do the same.”

There are many reasons why people attend the Ride. For Mirella’s team, it was her family’s experience, “my TD colleagues are aware of the impact that type 1 diabetes has played in our lives,” she explains. But it isn’t just a personal connection to someone affected by this disease that drives people to participate and Maurizio has seen this with his team, “I think those that are joining this year are motivated to support their community ahead of all else.”

Register for your local Sun Life Ride to Defeat Diabetes for JDRF or set an example and make an online donation to your fundraising.

 

Investigating the causes of beta cell dysfunction in type 1 diabetes

Type 1 diabetes (T1D) occurs when the immune system misguidedly attacks and destroys beta cells in the pancreas. Beta cells normally produce insulin, a chemical messenger that helps move sugar from food sources into cells throughout the body, which use it for fuel to stay alive. Without adequate insulin, blood glucose levels rise too high and can cause serious damage to all organs.

Dr. Heather Denroche at the University of British Columbia is currently examining a hormone called islet amyloid polypeptide (IAPP), produced by pancreatic beta cells and released in response to elevated glucose, in order to better understand the role it plays in the loss of beta cells leading to T1D, as well as in transplanted stem cell-derived beta cells.

Recent findings reveal that deposits of IAPP attract immune cells and cause inflammation. Dr. Denroche is investigating how this process occurs, and whether or not it influences the development of T1D and the outcome of beta cell transplants.

“Both the immune system and the pancreatic beta cells actively contribute to the underlying causes of T1D,” explains Dr. Denroche. “With support from JDRF, this research will advance our understanding of how IAPP, a beta cell-derived factor, participates in the progression of the disease, potentially leading to novel strategies to prevent or better treat diabetes in the future.”

“Heather is a brilliant young scientist who has brought new ideas and energy to this exciting project,” says Dr. Bruce Verchere, director of the Centre for Molecular Medicine and Therapeutics at the University of British Columbia. “We are both very appreciative of her JDRF advanced post-doctoral fellowship support, which not only allows her to pursue this work, but is also a steppingstone towards starting her own diabetes research laboratory in a few years.”

Better characterization of IAPP as a potential therapeutic target to prevent T1D progression and maximize the success of beta cell transplantation could advance knowledge needed for improved treatment of T1D and possibly even inform a cure.