Category: Ambassadors

Why we Walk: The Schaub Family shares their story

Receiving a diagnosis of type 1 diabetes (T1D) for their child can be overwhelming for a family. And it was no different for Tienne and Andreas Schaub, when on April 4th 2022, they learned their daughter Leia had T1D.

To honour Leia’s first year ‘diaversary’ (anniversary of her T1D diagnosis date) the family has put together a team for Vancouver’s Sun Life Walk to Cure Diabetes for JDRF, and Leia has the taken on the role of being the BC Ambassador – something the family considers a privilege.

“Over the past year, we have learned a tremendous amount as a family and have adapted to the new lifestyle. Leia continues to be strong and brave every day. From hiding under the table, crying, and refusing to let us give her an insulin injection, to now doing her own finger pokes, knowing how to read her blood glucose levels and what to do when she is having a low, and even prepping the needles for her shots – all amid starting kindergarten. Pretty amazing for a 5-year-old! She is our hero,” say Tienne and Andreas. 

Like many families, the Schaubs recall noticing out of character behaviour from their daughter in the days leading to Leia’s diagnosis.

“We still vividly remember the day she was diagnosed. For the week leading up to it, we noticed that she was always thirsty and going to the bathroom more than usual. She also seemed to be triggered more easily and very emotional. We started looking up the symptoms and everything pointed to diabetes. We thought “that can’t be, right? No one in our family has type 1 diabetes,” remember Tienne and Andreas. 

“On the Sunday before her diagnosis, she became lethargic and just wanted to lie around all day – not normal for a 4-and-a-half-year-old. So, the next day, we brought her to the doctor and within two hours of getting her blood work, we were called to bring her to emergency right away as her blood glucose was in the forties when it should be between 4-8. Those first few hours seemed like days as we watched her cry and yell as she was afraid to get her finger pokes and had to hold off eating and drinking. Her emotions were out of her control due to her high blood glucose levels, and she was screaming and kicking around in her hospital bed. We have never seen her like that before,” they continue.

There are an estimated close to 300,000 Canadians living with T1D – and this number is increasing at an alarming rate.In fact, Canada now has the fifth highest incidence rate of T1D in children aged 14 years and younger in the world, and researchers still don’t know why.

And while Tienne and Andreas recognized some signs and symptoms of T1D that Leia was experiencing, many parents don’t make the connection to diabetes until it’s a medical emergency. The prevailing medical wisdom used to be that T1D developed quickly, with a sudden onset of symptoms. Thanks to advances in screening and a better understanding of the human immune system, we now know that T1D does not develop suddenly but in fact the disease process usually starts long before insulin is required. Because most people do not have a family history of T1D, symptoms and a diagnosis often come out of the blue. In 25-45% of diagnoses in children in Canada, this unexpected diagnosis comes with diabetic ketoacidosis (DKA).

Fortunately for Leia, the family was lucky to have caught her T1D early enough that she did not go into DKA which can be life-threatening and result in a prolonged stay in ICU. They were allowed to go home after a one night stay in the hospital. 

Eventually after the insulin she needed started to kick in, Leia became her normal self again. The family was very grateful to everybody at BC Children’s Hospital for being extremely supportive and helpful in guiding them through those first few challenging days. There were even two clowns who visited the family during their hospital stay that brought a lot of joy to Leia. 

Over the next few days, the family went back to the hospital to learn how to manage type 1 diabetes together. This is a disease that affects an entire family, and the Schaubs along with their extended family approached Leia’s care as a collective.

They quickly came across JDRF and within the first two weeks after Leia’s diagnoses, they received a Bag of Hope, a toolkit with useful resources for children and teens who have been diagnosed with T1D and their caregivers. Along with educational materials, the Bag of Hope includes Rufus, the Bear with Diabetes® — to help show children that they are not alone while learning to take injections and test blood glucose levels.

JDRF also helped to connect Tienne and Andreas with peer support within one week of Leia’s diagnosis, which was extremely helpful to answer all the random questions they had and to talk to another parent who had gone through the same experience. 

Part of the reason why Tienne and Andreas joined the Sun Life Walk to Cure Diabetes is to help educate others who don’t have personal experience with T1D on how much a life and family is changed by a diagnosis, and why funding the research towards cures is so important.

“Leia (or any person with T1D) needs to check her blood glucose level at least 4-5 times a day (before every meal, at bedtime, whenever there are symptoms of a low/high) through finger pokes drawing blood that then gets applied to a glucometer. We did this process for the first few months after diagnosis and often checked her at night as well (midnight and 3am) by doing extra finger pokes to catch a low that might happen overnight and would otherwise go unnoticed. Lots of sleepless nights for us at the beginning and lots of sugar tablets and snacks in the middle of the night for Leia to get her blood glucose back to a safe range,” they explain.

“Now we use a CGM (continuous glucose monitor) which is a sensor that Leia wears on her abdomen 24 hours a day. It allows us to monitor her blood sugar remotely even while she is at school. It will also send us alarms on our phones, so we only need to wake her at night when her low blood glucose alarm goes off.

Still – before each meal, we need to calculate the amount of carbohydrates that Leia will eat and give her insulin shots to match the carbs in her food. That’s 4-5 shots a day and sometimes even more, especially during growth spurts or when she has a cold. There were times where we had to give her 2-3 extra shots at night to correct unexpected high blood glucose levels. It’s a constant balancing act. And there are no breaks, no days off,” they continue.

The family recently did the TrialNet screening to see if there was a genetic component to Leia’s T1D. They were especially worried about their younger son Rudi, as having one child with T1D elevates the risk for siblings to develop the disease as well.

“It’s a big relief to have this screening available as there were several times since Leia’s diagnosis where we were worried or paranoid about Rudi developing T1D and we did finger pokes on him too,” says Andreas.

 TrialNet screens for specific autoantibodies in the blood that make a T1D diagnosis more likely. Fortunately, at the time of screening, all the family’s tests came back negative for these autoantibodies. Research shows that while first-degree family members of T1D are at an elevated risk of developing T1D, like with Leia – around 85-90% of newly diagnosed cases do not have a direct family connection.

It’s been a tumultuous year of learning to adapt to the ‘new normal’ that comes after a T1D diagnosis in a family, but the Schaubs have already made a commitment to giving back and helping the other families who will come after them on this journey with T1D.

Team Leia’s Unicorns has set an ambitious goal of raising $40,000 for type 1 diabetes research, and the family is confident they will reach it.

“We are walking and fundraising with the hope that one day, there will be a cure – not just for Leia – but for every child and every family affected by type 1 diagnosis. JDRF has been with us from day one and has helped us stay positive throughout our journey,” say Tienne and Andreas. They encourage everyone to please support them and the Walk and help to turn type one into type none.

JDRF ambassador Sébastien Sasseville takes on the Race Across America in latest of endurance races

Sébastien was diagnosed with type 1 diabetes (T1D) in 2002. He made a commitment to himself then that T1D would never keep him from living life to the fullest, and he has followed through on that promise to himself. Since then, Seb has run across Canada, climbed Mt Everest, and participated in a number of the world’s hardest endurance races. On June 28th, 2021, he started a ride across Canada Canada in support of universal access to diabetes devices for all Canadians living with the disease. And this past June, he took on The Race Across America, or RAAM, an ultra-distance road cycling race held across the United States known to be the toughest in the world.

JDRF had the chance to connect with Seb and ask about his experience with RAAM.

What made you decide to pursue this race, and so close after riding across Canada?

“When I came back from the ride across Canada, I was tired, but I was happy and proud about what I had accomplished. There is always a recovery phase, it’s part of the deal that there is some suffering involved, Before during and after. Just a very small part of it. I don’t like to suffer more than anyone else, but it’s not the part I focus on – it’s what I learn, the impact, how I grow, that is the appeal. When you look at it from that angle, it’s tough not to continue doing these things.

RAAM is a much tougher ride, physically and mentally. People get hung up on it being shorter than the ride across Canada, but the course is far more demanding. It’s a lot more climbing, and it has a cutoff, it’s a race. So, it has a different context. And you have twelve days maximum to complete it. There is no margin of error. You must be on your bike 20-22 hours a day. 12 days of 1-2 hours of sleep. It’s the toughest ultra-cycling event in the world.”

This is an extremely intensive undertaking for anyone but competing in race of this kind while managing your diabetes adds another layer of challenge and complexity. How did that impact the race for you?

“It had a huge impact, and a big issue was the lack of cell phone reception – that was a massive surprise. We thought we would lose reception every once in a while, but the course goes through very remote areas throughout the course. That’s a safety thing so you aren’t riding on highways, it’s a set course. We ended up days without coverage, or very spotty coverage. The impact was that I was planning on checking my blood glucose on my watch, but that goes through the internet.  I couldn’t get it on my phone -so my team couldn’t see my blood glucose readings in real-time. So, we didn’t expect not having the data. And this impacted how I controlled my diabetes.

And honestly – it was a big source of frustration. A lot of people who don’t understand T1D believe – oh you have a CGM (continuous glucose monitor), and insulin pump – so you’re fixed. And some people think I must be different. That diabetes must be easier for me because I do these kind of endurance events. I’m not. I’m like everybody. I go through the same challenges. And I hate it sometimes. I try and embrace it as much as I can. But I’m human like everyone else. And if it slows me down, I tell myself that this is my life and journey. But it takes up time and space in your head and body. And it impacts everything.

There was a pharmacist there (at the RAAM), who probably understood it the most. And he came up to me almost every day, to say how amazing he thought it was that I was competing in this race and have T1D. Although it felt good, it was a reminder that most people don’t have his knowledge and don’t understand what we have to go through every single day.

But I must say – it was still far better than last year (the ride across Canada). Because we learned a lot from last year. These types of races are never going to be easy. So, you have to adapt.

Type 1 diabetes is the one thing that slowed me down the most during this race. And I’m immensely proud that I was even on the starting line. It’s by qualification or invitation only.  I was the only Canadian. To race, to race strong, to finish, to finish 12 out of 33 who started, that’s a very strong performance.”

How would you describe your endurance sport as a metaphor for living with T1D?

“I hear a lot from people, when they learn about what I do that ‘It’s so out there, it’s hard to relate’ We were fully aware of it – a year ago when I started looking for sponsorship and funding, I did wonder how to connect this with the larger world outside of the T1D community, because it’s so outside the realm of most people’s experience (living with diabetes).

But for me, it’s such a parallel for life managing diabetes. One rider, a team of 10 people, working 24/7. It’s like with T1D, it’s the team that supports, the team that takes all the decisions. They prepare the bike and fix all the issues. It really is a collective effort and success. You can’t even get through day 1 without the team.

I relate this to how living with diabetes really takes a community too. None of us do this completely on our own.”

Do you see yourself continuing to pursue these types of high intensity endurance sports?

“I don’t plan on stopping. I don’t ask people when they play golf when they are going to stop. It’s something they love. I’m aware that isn’t a typical kind of life, but I have so much fun, I learn so much, I grow so much. I’m not an adrenaline chaser. I won’t jump out of a plane. But these I will keep doing as long as I can. They are life-enriching experiences. I finished, but at the end of the day – whether you finish or not, it’s a very rich experience. The team becomes like your family. We created something very special. I was a very magical and powerful experience. So, I plan to continue doing these things for a long time.”

Any final thoughts?

“We need a cure. There are people like me who live well with diabetes, and we all need to live a fulfilled life before there is a cure. We do need to live in the now. But the fact of the matter is that this is tough to live with. And there were bad diabetes days. And it slowed me down. I know a lot about type one and exercise, it’s my job and I keep it as well-managed as possible. And even still, I have highs, I have lows. I hate it sometimes. My reality is the same as others with this disease.

This is why I am an ambassador for JDRF. Because I want to be part of the cure.”

Follow his journey on Instagram

Participating in clinical trials may change the course of type one diabetes

January 23, 2022 is the 100th anniversary of the first successful insulin injection for diabetes in a human.  Prior to this, a diagnosis of type 1 diabetes (T1D) meant certain death. On this date, a fourteen-year-old boy named Leonard Thomspon, who was dying from complications of T1D received the first real treatment for the disease. He would live another 13 years. Leonard could be considered the first human in an insulin clinical trial. As a result, millions across the globe can now better manage their diabetes.

This day has special meaning to our family. Our daughter Tilla was just 10 years old when she was diagnosed with T1D in the summer of 2019. Now, like everyone who lives with this disease, her days are a series of decisions, tracking her blood sugar and insulin levels, and measuring her food, particularly carbs. And although we are fortunate to have the best diabetes technology available to us, it can still be immensely stressful at times. It is a 24-7 disease with no days off.

After Tilla’s diagnosis, we started researching available clinical trials that she could be enrolled in, and Tilla bravely rose to the challenge. She enrolled in the PROTECT study, which is testing an investigational medicine called teplizumab – a drug JDRF Canada has supported earlier trials of. It is hoped teplizumab will help people with T1D to continue making more of their own insulin and reduce or even eliminate the need for insulin injections for many months.

PROTECT is a randomized controlled trial involving a placebo group. Despite knowing that Tilla could be placed in the placebo group, we still chose to participate, with the hopes that not only could it change the disease course for Tilla in the short term, but in the future could impact thousands of other people like her who are diagnosed with T1D every year.

Our son Allan is also enrolled in a T1D clinical trial at Sick Kids hospital in Toronto, ON. He has all the antibodies for the disease, which puts him at far greater risk of developing it in the future. Along with his mother, Allan has flown to Toronto twice. He takes one pill per day/ two pills per day on weekends. It is our hope that if he is not receiving the placebo – this treatment might prevent or delay him from developing T1D. And even if it does not, we know that he is still contributing to advancing scientific knowledge of how we might better screen for and prevent diagnoses of T1D.

Being involved in clinical research makes us feel as a family that we are directly and personally contributing to helping find a cure for this devastating disease. And we believe this is an important message. Participation in clinical trials is the only way we can get treatments to market and to everyone who can benefit from them. We consider anyone enrolled in clinical trials heroes.

What many people do not know is that the first insulin injection took place on January 11, 1922, but Leonard Thompson had an allergic reaction to it. And that when that first injection did not work, he took another step forward and tried again. From the bravery of one teenage boy, came millions of people whose lives have been saved by insulin. And every year across the globe, people living with T1D celebrate their ‘insulin anniversary’ while waiting for the next breakthrough in diabetes.

Every person who participates in a T1D clinical trial study helps us get closer to a cure. We recognize their courage and are so grateful for their help in accelerating research that will one day mean a world free from diabetes.

We are grateful to JDRF Canada, whose primary goal is funding the most promising research that will move us beyond insulin and toward a cure for T1D. Their investment in this research means that we can participate in these important clinical trials.

Henrik Karlsson, Anna, Tilla and Allan Karlberg, on behalf of JDRF Canada

www.jdrf.ca

Vancouver, BC

Tannis M. Richardson – lifetime of challenges, vignettes of my life

Tannis, along with her late husband George T. Richardson, were founding members of JDRF’s Winnipeg chapter (1971) and the city’s A Starry Starry Night Gala in support of JDRF. Tannis has also been on both the national and international boards for JDRF, which was formally established in Canada in 1974.

At 95 years old, Tannis is known throughout Western Canada for her exemplary community service and volunteerism.

While she always led a life of service, it was the discovery that one of their four children – their daughter Pamela – had type 1 diabetes (T1D) that found the family on the frontline of a battle they knew little about. Diagnosed at nine-years-old, they had to learn to manage a disease that was not well understood at the time, or well supported by Manitoba or Canada’s healthcare system.

It was because of this that the family became devoted to raising awareness of T1D and ensuring adequate supports for Manitobans living with the disease, something Tannis still does today with her support of universal access for diabetes devices and technologies through JDRF’s #AccessForAll program.

Sadly, Pamela died at the age of 29 from complications of diabetes. Shortly thereafter, Tannis and George were invited by Helaine Shiff, (another JDRF Canada founder) to attend the JDRF gala in Toronto.

“The gala in Toronto was a huge and lovely affair. The next morning, I phoned to tell Helaine what a wonderful job she had done – to which she responded, ‘that’s all very well Tannis, but what are you going to do in Winnipeg to help JDRF’.

I was at a dinner few weeks later in Winnipeg, and I was sitting next to (Regional Director, CBC Western Division) Donald Ferguson, when he asked me – what are we going to do in Winnipeg about JDRF. I replied who do you mean by ‘we’ – to which he replied CBC & you (Tannis). Due to this conversation we started to discuss what we could do. Eventually the idea came to us to have a gala.”

There were three other families in Winnipeg that were active and interested in what they could do to help fundraise for diabetes research, and together we formed a committee that organized Winnipeg’s first JDRF gala, A Starry Starry Night, named after one of Tannis’s favourite songs, and held on the plaza at City Hall. Today, nearly 35 years later, the annual gala remains one of Winnipeg’s premier fundraising events.

“I’ve seen so many changes during my time with JDRF,” says Tannis. “There is so much knowledge about diabetes now being publicized. It was slow coming, and with our high incidence of diabetes in Manitoba, it took a while before it started coming to the forefront. It was a slow start, but steady. And of course, the A Starry Starry Night Gala certainly helped a great many people realize what a challenge it was to have diabetes. It allowed us to show the public how life changing and life challenging T1D is, and why T1D research needs to be financed.”

Part of Tannis’ ongoing support came with the publication of her autobiography, Vignettes from My Life, which was self-financed so that 100% of the proceeds can go to JDRF.

“I remember so much of my life, what I’ve experienced and what’s happened – so it was suggested that I make an oral history of my experiences. I did that for a year with Janet Walker, (from the University of Winnipeg) but it evolved from there to thinking about putting it down on paper. “I guess I am a storyteller, and what resonated for me is that there was a purpose in telling my story.

Tannis met with Dorothy Ross, JDRF’s Director of Leadership Giving for a lunch, where they discussed JDRF, the pace of research and the Campaign to Accelerate. During this conversation Tannis informed Dorothy she would like to make a transformational gift in support of the Global Research Pillar, which will harness the work of world-leading investigators and trainees both in Canada and globally to make breakthroughs in areas of T1D screening, prevention, better treatment, and cures.

“There has to be something there that is going to be the breakthrough. Stem cell research seems to be the best thing that we know how to do, and if supporting the research monetarily helps us find a cure, we need to get the word out there,” Tannis explains of her reason to contribute to this area of T1D research. So many people feel that they are not able to donate, but if they realize that whatever they can give is a step forward, it all helps,” she explains.

“People feel we’ve been looking for a cure for a long time, but finding insulin was a game changing discovery. Once that one discovery was made, everything could come from that.  I feel that way about (T1D) research now – because it’s advancing so quickly. Today is the time to support it. If contributions are going to make that a reality. While we can’t foresee the future, for people with diabetes – a cure will mean their whole life will change. It will take a lot of work and struggle before they find the answer, I’m hoping it’s tomorrow.  At the age of 95 I hope I see it in my lifetime. I want to be part of it,” says Tannis.

JDRF is so thankful to Tannis for her remarkable contributions, and we are proud to announce her most recent generous investment in diabetes research during National Diabetes Awareness Month.

“There’s always a bright light in a challenge, and for me – it’s the wonderful people who are contributing who have enriched my life,” she says. ‘I feel very honored that I have met so many incredible people through JDRF. It is quite an organization – once you are in battle you realize that there are so many people who are working so hard to bring the end to and help us to finally win. The JDRF group are very special to me.”