Kidney Living Spring 2024

KIDNEY Living

Superheroes Build a Strong Community

What’s Inside - Spring 2024

RESOURCES

22 The Kidney Foundation Launches KidneyInfo.ca: Your Online Guide to Kidney Health

FOOD AND NUTRITION

More Meatless Mondays for Kidney Health

Middle Eastern Chickpea and Vegetable Stew Recipe

Ontario Branch

1599 Hurontario St., Ste. 201

Mississauga, ON L5G 4S1

1-800-387-4474 • 905-278-3003

ontario@kidney.ca

Brant County

1-800-387-4474

brant.president@kidney.ca

Central Ontario

1-800-387-4474 • 905-278-3003 daniela.piotrowski@kidney.ca

Chinese Renal Association

1-800-387-4474

shukyu.fong@kidney.ca

Durham Region

1-800-387-4474

Eastern Ontario

1-800-387-4474 •613-724-9953 jennifer.heale@kidney.ca

Hamilton & District

1-800-387-4474

deanna.kulczycky@kidney.ca

Kingston

1-800-387-4474 • 613-542-2121 sarah.jensen@kidney.ca

London & District

1-800-387-4474 • 519-950-5362 carl.cadogan@kidney.ca

Niagara & District

1-800-387-4474

deanna.kulczycky@kidney.ca

North Bay

1-800-387-4474

Northern Superior 807-624-2680 ontario@kidney.ca

Sarnia-Lambton 519-344-3462

kate.hardy@kidney.ca

Sault Ste. Marie 705-949-0400

tannis.mcmillan@kidney.ca

Timmins-Porcupine

1-800-387-4474 • 705-365-7492 timmins.president@kidney.ca

Waterloo – Wellington & District 226-338-6961

leigh-anne.quinn@kidney.ca

Windsor & District

519-977-9211 shannon.vanwatteghem@kidney.ca

60 Incredible Years

2024 marks the 60th Anniversary of The Kidney Foundation of Canada, one we share with two other iconic brands: the Ford Mustang; and Tim Horton’s. Pretty exclusive company, but the work of the Foundation is far different than that of those consumer brands.

During these 60 years much has changed. Much more than a logo, The Kidney Foundation brand has supported breakthroughs in treatments and programs to improve the quality of life of those on dialysis and many others living with a transplant. We know people are coping far better today than they were in 1964.

The commitment of thousands and thousands of volunteers and employees during that time raised funds to provide Hope and Help Hope being the $135+ million we’ve invested in research communities across Canada. And Help represented by patient programs like Peer Support, Short Term Financial Assistance, and countless printed and electronic educational materials. Not to mention the value of the Kidney Community Kitchen.

We celebrate many accomplishments knowing there is still so much work to do. The dialysis population continues to grow annually. Early detection and transplantation are important tools in the fight against chronic kidney disease, and the Foundation is committed to educating and advocating on both of these fronts. We know we need to do more. We know we need to do better.

The Foundation has been able to accomplish a great deal because of the vision and dedication of a few individuals back in 1964 who understood the magnitude of the challenges associated with kidney disease. From that small group based in Montreal, The Kidney Foundation has grown to support patients across Canada. With your ongoing energy and dedication, we will continue the fight against kidney disease and make every effort to positively impact the lives of future generations of patients and their families. We hope you will join us.

Yours truly,

Anthony Tirone, Executive Director The Kidney Foundation of Canada Ontario Branch

p.s. We’ve accomplished so much together. Check out our milestone moments captured in the timeline starting on page 14.

50 Years of Volunteering

By Erika Muscat

There aren’t many people who can say they’ve been a volunteer for one organization for over 50 years spanning multiple cities, and loving every minute of it, however, that is a title that Greg Robbins is proud to claim.

It all began in 1973. Greg’s late wife Susan had started dialysis a month before she and Greg were to be married. It wasn’t long before Greg and Susan realized they wanted to become involved with the local chapter of The Kidney Foundation. Greg’s first venture with volunteering for The Kidney Foundation was selling cases of hard candy during the annual fall campaign. Not long after, he was asked to join the board in Hamilton in 1976.

Years later, after a move to Alberta, Greg became involved in the Edmonton Chapter of the Foundation and became president of the Northern Alberta Branch. Eventually Greg’s work brought the couple back to Ontario. The couple settled in and soon founded the Sarnia-Lambton Chapter in 1985. As the inaugural president of the Chapter, Greg quickly moved on to become a member of the Ontario Branch Board, followed by Board President in 1986.

With improvements to anti-rejection medications, transplants between individuals who weren’t related were being explored more and more. Greg was tested

and was a perfect match to donate a kidney to Susan. In 2005, after 32 years on dialysis and two unsuccessful transplants, Susan finally had a successful transplant –a beautiful gift from Greg. However, numerous years on dialysis had taken its toll and sadly Susan passed away in 2010.

With a renewed interest in volunteering, Greg once again joined the Ontario Branch Board in 2011 serving as president from 2016 to 2018. He also served on the national board and was the organization’s National President from 2019-2020. While Greg’s volunteer work has led him to work at various levels of the organization, he has also remained heavily involved with his local Sarnia-Lambton Chapter; he’s one of the top fundraisers for the Kidney Walk every year. “I try and lurk in the background and help out wherever I can,” says Greg.

Greg’s true passion is volunteer recruitment. Building the Sarnia Chapter from scratch was both exhausting and exciting at the same time. He has loved meeting so many wonderful people throughout his volunteer career. His time on the nominating committee has been very satisfying; recruiting, providing orientation and training and then seeing new volunteers become involved and stay committed is a joy. “There is so much fulfillment in being a volunteer and seeing the effects of what you and the other volunteers do. You can’t ask for much more than that from life,” he says.

Being an active volunteer as well as a caregiver to his wife Susan has given Greg a front-row seat in how the treatment of kidney failure has changed over the decades. Greg fondly remembers when the first dialysis machine was installed on a school bus by the East Hamilton Lions Club at a cottage in Parry Sound. This became the start of Lions Camp Dorset.

Greg’s motivation for staying involved over the past 50 years has been meeting new people and always having fun. “If I wasn’t having fun, I wouldn’t be doing it. And it is also the people you meet in the process. That is first and foremost,” he says. While it may seem cliché, Greg says “you get more out of volunteering than you put into it.”

Susan (far left) and Greg (far right) with friends from Germany camping in Europe with a portable dialysis machine.

It’s All About the People

By Erika Muscat

If you had to sum up Liz’s reason for being so involved in the kidney community, it would simply be ‘the people.’ The people that volunteer with her, the people she has worked with, and the people she has helped.

“It’s a community. You see what a difference you can make. One person can make a difference. I know that I’ve made a difference in people’s lives because I’ve gotten involved,” says Liz. “Knowing there’s a community of support out there – it means everything.”

As a recently retired dialysis nurse for over 35 years, Liz is all about making volunteering fun. She was instrumental in bringing the Kidney Walk to Brantford and every year they celebrate the start of walk season with a kick-off week – each year with a different theme. The patients get involved and everyone has a good time.

Looking back, one of Liz’s favourite and most fun memories was when the chapter participated in a joint initiative with Trillium Gift of Life Network to form a Living Green Ribbon. Right there in the middle of Harmony Square in Brantford, her daughters took part in a flash mob and ended up on the front page of The Brantford Expositor, as well as on YouTube. Through various initiatives, Liz has done her part to help raise awareness of kidney disease and the work of The Kidney Foundation.

Liz has seen a plethora of changes in care for chronic kidney disease patients throughout her career in nursing. Medications have improved and frequent blood transfusions thankfully became a thing of the past. “The more blood transfusions you get, the more antibodies you have, and it’s harder to get a transplant. I would say that was one of the biggest changes,” shares Liz. The dialysis machines have also improved drastically, and so much more.

Liz finds it truly fulfilling when she sees patients after having had their transplant. They are so thankful and want to give back. “I don’t know what it’s like to be on dialysis. I saw what they went through every single day, but as healthcare professionals we don’t know what it’s

like to have to live with all the many restrictions they encounter as a result of dialysis.” This is also a reason why Liz believes so strongly in the Peer Support program. “The support that patients can provide to each other is so important.”

In addition to being Board President for the volunteerled Brant County Chapter, participating on the Ontario Branch Board and being a passionate Kidney Walk leader, Liz is also a huge advocate for Camp Dorset, a dialysis camp near Huntsville Ontario that offers patients time away from home, with the convenience of dialysis just a few steps away. Liz has been to Dorset as the camp nurse multiple times. “What a difference that makes for patients to be able to get away and be normal,” she says.

Truly, for Liz, volunteering is all about the people. She is incredibly grateful to the numerous dedicated patients and volunteers-turned-friends she’s had by her side along the way - “they are the reason I do what I do.”

Liz and fellow Brant County volunteer Brenda

New Support Group Provides an Online Community for PKD Patients

By Heidi Westfield

Maureen

The Kidney Foundation has launched a new support group for people living with polycystic kidney disease (PKD). The group meets online every month. It is an opportunity for PKD patients to share their experiences and learn how to best manage what can be a very challenging condition.

“When you first get diagnosed it can be frightening,” reflects Maureen, one of the group’s facilitators, who was diagnosed with PKD twenty years ago. “Then you come to realize, there are a lot of people with similar issues, and you don’t feel so alone.”

PKD is a genetic disease that causes fluid-filled cysts to grow on kidneys and other organs, and impacts kidney function. For some, PKD can be managed for decades without causing serious illness. For others, it leads to physical pain, discomfort, and kidney failure.

Maureen was diagnosed with PKD in her mid-fifties, while living in Dubai with her husband. The diagnosis came as “a total shock”; she was not aware of anyone else in her family, past and present, with the condition. At first, she had mild symptoms. Then, about two and a half years ago while back in Canada, and in her early seventies, she started to feel the tell-tale abdominal pain and discomfort and her kidney function dropped.

She finds the PKD Peer Support sessions help mitigate any stress she has around her condition and regain a sense of control over the disease.

“We don’t provide any medical advice, but we talk about how we manage our symptoms. You can learn a lot about the disease by listening to other peoples’ stories and hearing about their experiences.”

For Stephen, another group facilitator, PKD runs in the family. His mother, aunts and grandmother all have the condition. Stephen was first diagnosed at 15 years old. Symptoms began to emerge in his mid-thirties and his kidneys failed soon after that. Now he is on home hemodialysis and works part-time.

Sometimes, he says, when people are first diagnosed, it can be overwhelming. The support group can help patients better understand the disease’s stages and what different levels of kidney function mean. You can be living with Stage 4 kidney disease, for example, for many years before having to start dialysis. It can also help participants see that there are many activities you can enjoy, while on dialysis.

“Life as you know it isn’t over,” he says. “You can still travel and go on cruises. You just have to prepare in advance.”

For more information, visit kidney.ca/suppportmeetings

Stephen (left) and his family

60 Transformative Years - A Nephrologist’s Perspective

By Dr. Norman Muirhead

When The Kidney Foundation of Canada came into existence in 1964, few patients suffering from chronic kidney disease (CKD) were able to receive and benefit from treatment. The provision of chronic dialysis was limited to a few specialized centres in larger cites, inaccessible to most, and renal transplantation was neither widely available nor greatly successful. There was still limits in the understanding of the nature of organ rejection and of drugs available to prevent such rejection.

People who developed end stage kidney disease (ESKD) in the 1960s could thus expect limited availability to treatment and had, quite frankly, a limited life expectancy. It was into this information free zone that The Kidney Foundation was born in 1964, and since that time the Foundation has worked tirelessly to close the gaps in knowledge and understanding that were so evident at that early stage. So how has that gone?

I entered training as a nephrologist in 1979, retiring in 2020 after more than 40 years devoted to caring for kidney patients and undertaking research aimed at improving the understanding of chronic kidney disease and improving the lives of those suffering from it. There have been substantial changes in the lives of kidney patients in that time.

For example, I “learned” during training that hemodialysis treatment was not suitable for patients who had kidney failure associated with diabetes, as exposure to blood thinners during treatment would inevitably lead to blindness. This urban myth has been busted: diabetes currently accounts for more than 50% of patients living with ESKD in Canada and remains the #1 cause of chronic kidney disease not requiring dialysis.

The latest report from the Canadian Organ Replacement Registry found that as of December 2022 there were 48,375 Canadians living with End Stage Kidney Disease, including some 29,809 on dialysis and 18,566 who had a functioning kidney transplant. However, this represents just the tip of a very large iceberg, as it has been

estimated that up to 10% of the Canadian population suffer from chronic kidney disease. While not all of those at risk will ultimately develop end stage kidney disease, the societal costs of care are substantial. Those receiving dialysis or transplant in the current era can expect a substantially better quality of life and life expectancy than in former times, but such treatments come nowhere close to a cure for kidney disease, the ultimate goal.

Throughout the last 60 years The Kidney Foundation has been there for patients: funding key research endeavours, providing education about kidney disease to patients and caregivers, advocating with all levels of government for patient rights, and providing direct

financial support to people living with kidney disease. While we may still be some distance from finding a cure, we are at a point where patients at risk can be identified early enough in their renal journey that treatments to decrease risk of progressing to end stage kidney disease can be offered. The next 60 years of The Kidney Foundation’s existence will hopefully lead to further improvements in the care of people living with kidney disease and a cure.

Dr. Norman Muirhead

Grateful for 50+ Years

By Terry Young F

ifty years later, I am still both amazed and grateful that someone I have never met nor will ever meet could make such a profound difference in my life. September 8, 2023 marked the 50th anniversary of my kidney transplant. Fifty years ago, I was given a new lease on life when a kidney was flown from Winnipeg to Vancouver and transplanted into me. Someone had died too early but their gift of a donated kidney would live on.

After losing my first kidney in 1968, and my second one in 1971, I spent almost two years on dialysis, which involved spending three nights a week in the hospital hooked up to a dialysis machine for 10 hours at a time. My diet at the time was severely restricted, no salt, very little protein, and a daily limit of just 350 ml of fluids.

Salt free tuna fish sandwiches, with salt free butter on salt free bread was a staple of my diet. The dialysis treatments were extremely debilitating, and I lived in a constant state of exhaustion, limited to part time attendance in grades 10 and 11 with virtually no social life. My medical condition was particularly hard on my mother, a single parent who battled mental illness much of her life.

The remarkable gift of a kidney from someone who had passed away in Manitoba, changed all of that. Fifty years ago, transplants were largely enabled through the generosity of donors and/or their families who donated the organs. My transplant was the first deceased donor organ to be flown to British Columbia from another province.

My initial diagnosis was a rare disease called Fibro Muscular Hyperplasia of the renal artery. I was told that I was only one of a handful of people to be diagnosed with this. Ironically, 50 years post-transplant, as one of the longest surviving kidney transplant recipients I am again part of an exclusive club, but now one that I am grateful to be a member of.

I have no idea why my kidney has lasted so long. At the time of my transplant in 1973, surviving five years was a stretch target, let alone 10 times that. Yes, I take my medications every day … anti-rejection drugs plus

medication to help manage the side effects from the anti-rejection drugs. I try to have a healthy diet and exercise regularly but other than that, I can’t point to anything that would contribute to my fortune. One medical researcher speculated that eventually after so many months the body stops trying to reject the foreign organ, or in my case my transplanted kidney, and begins to accommodate it. That state of accommodation is something that I have tried to guide my approach to life. The last 50 years haven’t been without its challenges given my immunocompromised condition.

Internal infections, colon cancer, melanoma and too many cases of skin cancer to count have resulted in many health scares and hospitalizations. Covid was a nightmare. My wife Susan and I spent much of the first two years in isolation at home. I went 19 months without seeing my two daughters.

But all of that is completely forgotten when my routine blood tests come back with a normal creatinine level of 94 and kidney function at 70 per cent. The selfless act of donation of that person and family in Winnipeg gave me an opportunity to live my life every day to the fullest. I finished high school and college, became a journalist before joining the electricity industry where I worked for forty years.

I have also tried to give back, volunteering and raising much needed funds for the Kidney Foundation of Canada. Since its inception 60 years ago, The Kidney Foundation has raised more than $135 million to fund research that has been instrumental in ensuring that kidney disease is no longer the death sentence it was when I was on dialysis.

I have had incredible medical support from Dr. Carl Cardella and Theresa McKnight at University Health Network’s kidney transplant team, just a few of the many medical practitioners that have looked after me.

Almost 1,800 kidney transplants were performed in 2022. Despite that, almost 3,000 people are still on a waiting list, hoping for a new kidney that can change their lives in the same way that it has changed mine. Signing a donor card can help make that happen. While

Terry and his wife Susan

live donors are becoming more common, deceased donors still account for about 80 per cent of kidney transplants.

September 8, 2023 wasn’t so much a day of celebration for me, but more of a day for reflection and gratitude. Reflection on the last 50 years of my life and how fortunate I am, gratitude for being able to spend that day with my family. September 8 was also my wife Susan’s birthday. Being able to spend it together with our daughters Tessa and Kelsey, their husbands Jordan and James, and the newest additions to our family, twin grandchildren Violet and Everett, was a day I could never have imagined 50 years ago. But mostly September 8 was one more opportunity to give thanks to that family in Manitoba for the incredible life they have allowed me to live.

Join us on Wednesday, June 5th, for The Kidney Foundation of Canada’s 60th Anniversary Celebration at the York Mills Gallery, Toronto.

An Evening of Hope will be an event to remember, bringing together supporters and friends for an incredible evening.

Emcee, Cristina Howorun, will be joined by keynote speakers: Dr. James Scholey, Dr. Ayodele Odutayo, Dr. Leanne Stalker

TICKETS ON SALE NOW! Visit kidneygala.ca or call 1.800.387.4474

Special Thanks to our Sponsors and Supporters:

kidney.ca

Imagine the Possibilities Let’s Keep Making History.

The Kidney Foundation of Canada’s 60th anniversary is a year to celebrate the many achievements made by our donors, volunteers, and medical community. In our 60 years of developing research opportunities, programs, services, and awareness campaigns, we have helped to change the course of kidney disease, thanks to you, our generous supporters.

We need your help to make history again. As we celebrate the milestones since 1964, we also look to the future possibilities with renewed hope: Research discoveries that reach for advances in treatment and prevention and continue to seek a cure. Innovative programs that deliver hope, support, and care. Broader awareness and understanding of the kidney and its importance to overall health.

We need your help to take our vision to new heights. As with many charitable organizations, our organization began because the Tarder family took a stand and did something bold when their son Morty lost his battle with kidney disease. A diagnosis in the 1960s was virtually a death sentence, people with kidney failure

had little hope of survival. Dialysis was considered an extraordinary treatment and restricted to very few.

Transplantation was still experimental. The Tarder family believed that research into this poorly understood disease was vital. They banded together to start a movement that stretched across provincial boundaries to form a national organization dedicated to improving the lives of those living with kidney disease.

“The advances made by The Kidney Foundation have impacted the lives of countless Canadians living with kidney disease, through investments in research and the delivery of programs, services, public awareness campaigns and advocacy efforts. But our work is far from over,” said Anthony Tirone, Executive Director of The Kidney Foundation’s Ontario Branch.

“Your generosity and support of our 60th Anniversary campaign – Let’s Keep Making History will help us create a future where kidney disease is better understood, detected earlier, better treated and ultimately cured.”

Learn more or give at kidney.ca/60th

Meet Researcher Dr. Odutayo

When did you decide you wanted to be a doctor?

I decided I wanted to be a doctor at the age of 10. Like many other young people, I was intrigued by the physiology of the human body and the potential to make an important difference in the lives of other people. As well, because of my international upbringing I also became keenly aware of the gaps in health and wellbeing between different parts of the world and these early childhood experiences motivated me to use the practice of medicine as a vehicle for creatining greater equity at the individual and population level.

Where are you from? Where did you study?

I was born in Nigeria and lived there for 7 years. I relocated to the British Virgin Island with my mom and sister from the age of 7 to 12 and then relocated to Canada. I completed undergraduate studies at Western University, London, Ontario, medical school at the University of Toronto (UofT), and a Masters and DPhil in Epidemiology at the University of Oxford as a Rhodes Scholar. With respect to clinical training, I completed my Internal Medicine, Nephrology residency as well as a post-doctoral fellowship in cardiorenal clinical trials at UofT.

How did you become interested in nephrology?

I was inspired to pursue Nephrology because of my mentors. As a first year undergraduate student, I worked as a summer student for Drs. Michelle Hladunewich, David Cherney and Ron Wald. Although I was primarily involved in research, I also had the chance to attend clinics. My mentors served as role models, not only for their clinical acumen but for their commitment to advocating for their patients. As well, I was inspired by how they incorporated clinical research into their every day practice in order to ensure the best outcomes were obtained for patients.

My conviction to study Nephrology also stems from my research training. I have always been intrigued by the important research gaps that existed in nephrology. There is much to be discovered in Nephrology to improve clinical outcomes for patients. I couldn’t be happier having chosen Nephrology as my medical specialty. I enjoy the breadth of medicine it covers (from acute clinical care to chronic disease management) and the unique opportunity to form longitudinal relationships with patients.

What are you currently researching?

My research focuses on the intersection of kidney disease and cardiovascular disease. Both of these conditions are leading causes of illness and poor health. While these conditions can occur separately, they often coexist, resulting in more advanced disease. The coexistence of kidney disease and cardiovascular disease is therefore recognized as a unique clinical entity known as “cardiorenal disease”, which can lead to heart disease, end-stage heart dysfunction known as heart failure or end-stage kidney disease. Improving our understanding of cardiorenal disease is an important opportunity to alter the natural history of kidney and cardiovascular disease.

I am particularly interested in designing novel clinical trials that allow us to expand the use of highly effective kidney and cardiovascular protective medications. The medication class I am currently focusing on is sodium glucose co-transporter-2 inhibitors (SGLT2 inhibitors). SGLT2 inhibitors are new medications that reduce the occurrence kidney disease and heart failure by 40%. The use of these medications has only been studied in people with diabetes or select people who have already developed advanced kidney disease and heart failure. Expanding the use of these medications to new populations such as those without diabetes but who are at risk for kidney disease and heart failure may be beneficial. This will shift the focus toward prevention

as opposed to delaying treatment until a patient has advanced disease.

How will your research impact the treatment of kidney patients? What is the long-term goal?

People without diabetes who have previously had heart attacks, strokes or highblood pressure may be at a high risk for kidney disease and heart failure. However, people without diabetes have been excluded from studies of new medications such as SGLT2 inhibitors, which can reduce the risk of kidney disease and heart failure by up to 40%. SGLT2 inhibitors are also safe medications.

My research will use a new clinical trial design to study the effect of SGLT2 inhibitors in people without diabetes who are at high risk for kidney disease and heart failure. This clinical trial may identify a new treatment that can be used for prevention of kidney disease and expand treatment options for people who are at high risk.

My research will also allow me to establish a clinical trial infrastructure where routine collected health information that are available through provincial health databases can be used to identify, enrol and study people as part of a clinical trial. This infrastructure will allow me to study other safe and efficacious medications that may help prevent kidney disease.

What does the grant support from The Kidney Foundation mean to you?

I feel particularly privileged to be a recipient of the CIHR and Kidney Foundation of Canada REDI award. The entire application and selection process has caused me to be quite reflective. As the oldest of two children in a single parent immigrant family, I would not have predicted the academic journey I have been privileged to have. I feel fortunate for the mentors who invested in me early on in my training. I hope my academic journey speaks to the impact that early culturally responsive mentorship can have on young students, irrespective of the communities the students come from or the resources they have at their disposal.

What word would you use to describe the kidney research community in Canada? Why?

I would describe the kidney research community as a family. I was first introduced to the kidney research community in Canada at the age of 18 and I have always felt at home. The focus of the community has always been on supporting trainees to excel and the support from peers have always been unconditional.

New Peer Support Group Focuses on Pregnancy and Parenthood

by Heidi Westfield

Are you living with kidney disease, and thinking of starting a family? You may want to join a new online Peer Support group developed by The Kidney Foundation. At the Reproductive Care and Chronic Kidney Disease support group, the focus is on key issues around kidney disease and pregnancy. They include:

• Dialysis and pregnancy

• Having children after a kidney transplant

• Juggling parenthood and your health

Michele is one of the group’s facilitators. She was diagnosed with Goodpasture’s Syndrome about five years ago, an autoimmune disease that caused her kidneys to fail. After being on home hemodialysis for more than two years, she had a kidney transplant in 2021.

Now in her early thirties, Michele and her husband are thinking about starting a family. They are concerned about whether her condition is hereditary and can be passed on to any children they may have. There are also questions around medications she is now prescribed or took in the past.

She finds speaking with others who are facing – or have faced - similar situations helps ease fears about the

future. “The group is very helpful,” Michele says. “Just to see people at the meeting who had children after having a kidney transplant makes you feel better about where you are going.”

Wendy is also a group facilitator. She was diagnosed with lupus in 2009 and soon after doctors discovered problems with her kidneys. She was on peritoneal dialysis for four years and underwent two hip replacements before having a kidney transplant in 2018. Now she is the mother of two young girls, one a young baby and the other a toddler. She is juggling being a parent with her own health concerns. It is a lot of work, Wendy says, and keeps her very busy.

For her, the Peer Support meetings offer a chance to share her experiences around pregnancy and motherhood and learn from others.

“I never had anything like this before, where I can speak with people who were kidney patients and then had children,” Wendy reflects. “If I can share what my journey was, and if doing so helps make someone else’s decision around starting a family easier – then why not?”

The Reproductive Care and Chronic Kidney Disease Peer Support group meets online.

For more information, visit kidney.ca/supportmeetings

Michele Holmes and her husband

Wendy Narh

Super Memphis is a Superhero

by Erika Muscat

Six-year-old Memphis was born with Goldenhar Syndrome, a rare congenital condition which has also affected his kidneys. Among a host of other diagnosis’, Memphis has chronic kidney disease, right renal agenesis and solitary left kidney. Memphis has had 19 diagnoses in total and 13 surgical procedures in his short life with more to come. In his first few years of life, he has spent more time in hospital than at home. He has missed many holidays and events with friends and family. He must be connected to his feeding pump three times per day to maintain proper hydration for his kidney and hypertension. Sometimes his kidney disease tries to set him back, but he won’t let it. “Memphis is our superhero. He is resilient, kind and brave and nothing short of amazing,” says his mom, Madison.

The family joined the Kidney Walk for the first time in 2023 to do their part in raising awareness about kidney disease. Memphis loves to teach others about his condition and had a great time being part of the larger kidney community. His parents, Madison and Adam, want Memphis to learn about himself and know that the community is there to support him. It was exciting and inspiring for Memphis to be a part of something bigger. “The Walk was really eye opening for us. We heard speakers talk about their journey, and having others surround us who are on this same path was really empowering to build hope,” says Madison.

Their favourite part about the walk was seeing everyone come together supporting their loved ones with kidney disease. Likewise, it was special for Memphis’ family and friends to be able to come out and be there for him in

such a tangible way. The family was incredibly touched by the amount of support they received. “It encourages us and builds hope and resilience within our journey. We felt so loved and supported and thankful,” says Madison.

It isn’t easy travelling back and forth from Sault Ste. Marie to visit Memphis’ medical team in Toronto and it does put a strain on the family when they must spend time apart. Lots of video calls and the support of extended family makes all the difference. The journey with kidney disease doesn’t just affect Memphis, it affects their entire family, including Memphis’ sister. “Our normal might not look like everyone else’s but it’s keeping our family together that really matters,” added Madison.

The Kidney Foundation has been such a help. Madison connected with other parents of children living with kidney disease as part of the Paediatric Caregivers Peer Support group, one of the many groups offered by The Kidney Foundation. “It really helps to hear stories from others who are going through similar experiences. I’ve been able to ask different questions in clinic, based on the things I’ve learned from others in the group. The future is unknown and having some sort of picture of what we might expect really helps put my mind at ease.”

This is one of the many reasons why fundraising for the Kidney Walk is so important – so that the Foundation can continue to provide programs and services, like Peer Support, workshops and so much more to assist people in their journey with kidney disease.

For Memphis and his family, they plan to participate in the Kidney Walk as long as possible. It is clear by Memphis’ wide smile that he enjoyed himself at the Kidney Walk too!

The Rollin Family

The Rollin Family

Early Developments

Surviving kidney disease is a feat that is impossible without the achievement of innovative breakthroughs in medical science. In the 20th century, modern medicine saw the arrival of two major achievements: hemodialysis and organ transplantation. After this point, kidney failure was no longer the end of the road for those who were affected.

1945

Holland

A young physician named Dr. Willem Kolff was the first to succeed in saving the life of a patient suffering from acute kidney failure using a dialyser he had built with spare parts while working clandestinely in Nazi-occupied Holland.

1958

Canada

Over a decade later, Dr. John B. Dossetor coordinated a successful kidney transplant between identical twins at the Royal Victoria Hospital in Montreal, the first kidney transplant in the Commonwealth.

The Kidney Foundation of Canada’s First Ten Years

Despite the advances of the forties and fifties, Morty Tarder, a young Montreal architect suffering from Goodpasture’s Syndrome, an autoimmune disease that leads to kidney failure, could not be saved.

Confronted with their son’s death, the Tarder family vowed to start an organization that would raise money for research into this poorly understood disease.

The Sixties

In the 1960s, hemodialysis became a treatment option for patients with chronic kidney disease with the invention of the Scribner shunt. The shunt was a U-shaped tube that provided easy, ongoing access to a patient’s circulatory system.

Montreal, Canada

The Kidney Disease Foundation of Canada, as it was known then, was created with Dr. John Dossetor as one of its Founding Members. 1964

In the beginning, only a handful of hospitals provided hemodialysis, and selection committees determined who would receive this life-saving therapy.

1965

Kidney Research Is Prioritized

With the support of Dr. Dossetor, we established kidney research as a high priority and began to advocate for greater awareness of kidney disease, more treatment centres, and more research into kidney transplantation

In 1965, The Women’s Auxiliary of the Foundation also organized the first child-testing program to screen for kidney disease.

1973

Funding Medical Research

We funded medical research into kidney-related diseases by allocating $25,000 for grants

The Seventies

In the 1970s, the public started becoming more aware of kidney disease and dialysis as information brochures became more widely available, and toward the end of the decade, Canada officially declared March as Kidney Health Month to further grow public awareness of kidney disease and raise funds for research.

Dialysis times also shortened to 4-hour sessions, 3 times per week, and has become much more accessible worldwide

1968

The “Trick or Treat” Campaign

We launched our first major fundraiser, the “Trick or Treat” campaign, endorsed by then Prime Minister Pierre Elliot Trudeau.

1969

Ontario Branch Created

George deVeber and Stan Fenton, along with Leo Hyland, James Clarke and William Blackburn helped spearhead the movement.

1974

Our First 10,000 Volunteers

Under the leadership of Lawrence D. Bresinger, a Founding Member and our first National Executive Director, we grew from a small group of individuals to an important Canadian health charity. By the time we celebrated our 10th Anniversary, in 1974, volunteers for our Foundation numbered more than 10,000 nationally.

New Organ Donors

In 1974 alone, the Foundation distributed more than a MILLION organ donor cards.

1979

A Year of Major Success

As March became Kidney Health Month, the month also saw the inauguration of what has become the annual, nationwide Door-to-Door Campaign to raise funds for kidney disease research.

The Eighties

In the 1980s, it was estimated that 1 MILLION CANADIANS suffered from one form or another of kidney disease. So, our Foundation stepped up its efforts to increase awareness and reduce the burden.

1982

A New Resource for Patients

The first edition of the Living With Kidney Disease patient support manual became available in both English and French.

1985

Over 1 MILLION wallet-sized cards were distributed, explaining the warning signs of kidney disease.

Erythropoietin

Patient advocacy ensured that erythropoietin (EPO) became a part of the provincial health services program.

1987

1981

The Public Relations Campaign

A nationwide public relations campaign was mounted profiling four people “living with kidney disease”, helping to put a face on Canadians directly affected. The campaign included newspaper and magazine ads as well as television and radio placements

1984

Organ Transplant Programs

In order to maximize opportunities for Canadians and patients to respectively donate and receive lifesaving organs, we supported computerized retrieval programs across Canada to coordinate organ transplantation and tissue matching interprovincially and internationally.

These programs included Alberta’s Human Organ Procurement and Exchange (H.O.P.E.), the Multiple Organ Retrieval and Exchange (M.O.R.E.) in Ontario, Quebec’s Metro Transplantation, the Maritime Organ Retrieval and Exchange (M.O.R.E.), and the Organ Procurement and Exchange of Newfoundland and Labrador (O.P.E.N.).

1993

Program Successes

Our Board endorsed three core “national” programs for delivery to constituents across the country:

• Short-Term Financial Assistance

• Living with Kidney Disease Manual

• Information and Referral

Between 1984 and 1994, our Foundation showed evidence of pronounced progress in all areas of its work. We provided funding for over half of all non-governmental kidney disease research in Canada; and the array of support programs we offered included Travel Loans, Emergency Financial Assistance, and Educational Symposia.

We also took an active role in government relations, pressing provincial leaders to address the vital needs of people living with kidney disease by ensuring the availability or accessibility of optimum treatments, such as cyclosporine to combat graft loss for transplant recipients or erythropoietin to help with anemia in dialysis patients.

1995 Organ Donation Challenge

We hosted the Links to Success Forum with 105 key stakeholders from government, healthcare institutions, the organ donor community, and the Foundation itself, to develop solutions to the critical shortage of organs in the organ donation process and propose ways to work collaboratively.

We responded to the organ donation crisis with implementation of the LIVES plan (LEADERSHIP - INFORMATION - VITAL FUNDING - EDUCATION - SPECIAL PROJECTS), empowering collaborative projects to significantly increase the number of organs and tissues available for transplantation in Canada.

1997

Serving the Pediatric Population

Two new resources became available for those supporting the pediatric population affected by kidney disease: Your Child and Chronic Kidney Disease and Childhood Nephrotic Syndrome

2000 A Special Research Competition

We organized a special research competition focused on organ donation. One of the successful outcomes: National Guidelines to Address Gaps in the Organ Donation Process, based on research by Dr. Sam Shemie.

1996

We launched a new pan-Canadian website and reached up to 11,000 visitors within two years.

Launch of the Medal for Research Excellence

Dr. David Z. Levine was awarded the recognition during this inaugural year.

5,000 People Reached

Our Living with Kidney Disease manual reached 5,000 people annually and became available in six languages and in formats like video cassette and audio tape with versions compatible for the visually impaired.

1999

Critical Findings

We undertook a comprehensive survey, involving 18,000 patients across Canada, to assess educational and emotional support services

Findings revealed that a large group of patients lived over 50 km from their treatment team and many were living below the poverty line. There was a critical shortage of:

1. kidneys for transplantation

2. job retraining for people with end-stage renal disease

3. funds for research

The Kidney Foundation of Canada Celebrates Its 50th Anniversary

2004 to 2014

The decade leading up to the Foundation’s 50th Anniversary was a “record” one. We were involved in more than 30 innovations over the past decade – and we know the involvement was needed.

Today, 1 in 10 Canadians has kidney disease and millions more are at risk and don’t even know it because the symptoms are often silent. But we’re doing everything possible to face and stare down the challenge of kidney disease – and we’re not doing it alone.

2004 Looking Ahead with KRESCENT

We launched the first competition of the newly created Kidney Research Scientist Core Education and National Training Program (KRESCENT) to cultivate the next generation of kidney researchers.

2006

Offering Financial Support

The BC Branch and BC Transplant Society jointly launched a 3-year pilot project: Living Organ Donor Expense Reimbursement Program (LODERP) to reimburse living kidney and liver donors for expenses related to their gift of life, such as travel, accommodation, and loss of income. This BC pilot project was used as a model to develop and implement similar programs across the country.

2007

The Kidney Health Centre was piloted in Ontario to screen participants for risk factors for kidney disease.

2005

We distributed the “Am I at Risk” brochure through our Branches and Chapters.

We launched the national KIDNEY CONNECT Peer Support Program.

We revitalized our website www.kidney.ca with expanded and updated content and enhanced features.

March 9, 2006

Inaugural World Kidney Day

2007

Working with Aboriginal Community

The Manitoba Branch launched the Island Lake Project, a curriculum designed for primary and secondary disease prevention, to help address the growing incidence of kidney disease in the Aboriginal community.

2007 A National Conference

We hosted Horizons 2015, a national research consensus conference to define research directions for the Canadian kidney health community and describe areas where capacity building is required to support the identified strategic directions.

2009 Growing Public Awareness

To sensitize Canadians to the importance of kidney health, we developed new PUBLIC AWARENESS CAMPAIGNS. We also launched the Kidney Stories of Hope Awareness Campaign to encourage e-testimonials from people personally touched by kidney disease.

Advocacy Success

Long-term advocacy efforts of The Kidney Foundation are celebrated when the Ontario Renal Network is formed to provide a coordinated approach to renal care in Ontario.

2011

Launching A Screening Program

We launched a nationwide targeted screening program to enable early detection of kidney disease and management of risk factors for the disease.

Better Knowledge Dissemination

We partnered to support CANN-NET, a research network that links together Canadian kidney disease treatment guideline producers, knowledge translation specialists, and knowledge users to improve knowledge dissemination and care of patients with kidney disease.

2009 The Great Canadian Kidney Quiz

Our Great Canadian Kidney Quiz revealed that 60% of Canadians are unable to identify diabetes or high blood pressure as the two major causes of kidney failure.

2010

Emphasis on Organ Donation

We supported the fifth edition of the CANADIAN TRANSPLANT GAMES. These Games are critical to nationally recognize the generosity of organ donors, celebrate the renewed health of organ recipients, and sustain the hope of kidney patients desirous of a dialysis-free life.

The Federal Government launched the Living Donor Paired Exchange Program across the country.

Making organ donation and transplantation a priority, a form of Living Organ Donor Expense Reimbursement Program (LODERP), was made available in every province.

2011 A Nutrition Resource

We launched the Kidney Community Kitchen, an online nutrition resource for people living with kidney disease, made possible through a bequest from the James Andrews estate.

2013

The National Transplant Program

We partnered with the federal government to support a MULTI-MILLION DOLLAR Canadian national transplant research program to address barriers to increase organ and tissue donation in Canada and enhance the survival and quality of life of Canadians who receive transplants.

We joined forces with The Macquarie Group Foundation (Australia) and The Alport Syndrome Foundation (U.S.) and participated in our first international research competition into Alport Syndrome Alport Syndrome

Providing Financial Support

We provided nearly $1 MILLION in financial support to people living with kidney disease.

2016

Can-SOLVE-CKD

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) was launched. We were a partner since inception.

2012 Raising Funds

We launched the NEW CHALLENGE CAMPAIGN to raise new funds to support initiatives across the country. The Pearson Family were among the first significant contributors with a donation of $250,000 over 5 years for research in the area of nephrotic syndrome.

Kidney Cancer Research

We partnered with Kidney Cancer Canada and the federal government to support a national research network to promote research and develop resources to support the care and management of kidney cancer patients

2014 New Media Tools

Our social media boasted 8,000 Facebook Friends and 3,000 Twitter followers.

We launched our branded social network, taking the Kidney Connect Peer Support Program online kidneyconnect.ca

We launched an online risk assessment tool for kidney disease: available in four languages at www.kidney.ca/risk (nearly 20,000 visits in six weeks).

Public Service Announcements

We launched public service announcements to promote awareness of risk factors for kidney disease and a new online risk assessment tool for kidney disease.

2018

Working to Eliminate the Burden

We, alongside other committed organizations, funded research aiming to improve current dialysis methods and eliminate the burden of kidney disease.

We also released a report on the Burden of Outof-Pocket Costs for Canadians with Kidney Failure.

2020

The Pandemic

Going Virtual

The impact of COVID-19 brought new virtual program offerings to help those living with kidney disease feel supported and stay connected.

2022

EDKD and SUGARNSALT

We contributed a total of $1 million over five years (2021-2026), matched by the CIHR, to fund a comprehensive research project called SUGARNSALT to accelerate research into diabetic kidney disease.

Dr. David Cherney, Principal Investigator of the SUGARNSALT project, is dedicated to find ways to prevent kidney failure and other serious complications in people with type 1 diabetes as they often do not get to benefit from the treatment innovations available to those with type 2 diabetes.

2020 A New Look

We adopted a bold new image, aiming to bring kidney disease out of the shadows and into the spotlight, and raise the general profile of kidney disease and its impact on the health of Canadians.

An Updated Nutrition Resource

We re-designed the Kidney Community Kitchen site to render it more user-friendly, added a Meal Planner tool to help users create personalized menu plans, and added a nutrition calculator to allow people to make informed, kidney-friendly nutrition choices.

2021

Risk

Awareness

Our Risk Awareness Tool was upgraded, allowing for a more interactive experience and encouraging Canadians to learn more about their kidney health. By the end of summer 2021, the tool was available in five languages: English, French, Mandarin, Chinese, and Punjabi.

Support for Living Donors

We implemented a top-up Wage Replacement Policy through our engagement with the Living Donor Circle of Excellence and became an official partner of the program in 2023, encouraging other companies to follow our lead.

The Kidney Foundation Launches KidneyInfo.ca: Your Online Guide to Kidney Health

As the new year gets fully underway, The Kidney Foundation of Canada is thrilled to announce the launch of KidneyInfo, a new online portal aimed at providing vital information and support to people affected by kidney disease.

This portal is designed to connect you to resources specific to where you are in your kidney journey. Whether you're living with chronic kidney disease, navigating kidney failure, receiving dialysis, thinking about organ donation and transplantation, or exploring conservative kidney management, KidneyInfo has resources to support you.

You can browse a wide variety of topics including kidney health, kidney-friendly nutrition and recipes, mental and physical well-being, advocacy, research, and much more. Find practical tips for living with kidney disease, learn about the latest research breakthroughs, and access workout videos, breathing exercises and cooking demos, all from one online portal. KidneyInfo empowers you to better understand and manage your kidney health.

Available in English and French, this portal also features key Foundation programs such as the Kidney Community Kitchen and the Kidney Connect Peer Support program, making it a one-stop destination for those affected by kidney disease. It also provides an opportunity for you to engage with us through newsletters, surveys, and quizzes, enhancing your connection with the Foundation and with the kidney community at large.

Carrie Thibodeau, National Director of Programs and Public Policy, highlights the value of the portal to those affected by kidney disease, saying “A kidney disease diagnosis can have a devastating effect on patients and their loved ones. The KidneyInfo portal is a central hub of accurate, up-to-date information and support designed to empower everyone on a kidney journey.”

The Kidney Foundation is dedicated to empowering people living with kidney disease and their care partners by equipping them with the support and knowledge they need to navigate the challenges they’re facing. Visit the portal today at kidneyinfo.ca.

A Guide for Every Step of Your Kidney Journey

Chronic

This path is for those who have been experiencing kidney damage or a decreased level of kidney function for a period of three months or more. Learn how to avoid or delay kidney failure.

Organ Donation & Transplantation

Whether you're looking for information on kidney transplants or are considering being a donor. learn more about the process, the options, and life after a transplant.

As your kidneys fail, you may start experiencing some symptoms. Learn more about living well with kidney failure.

Dialysis

This section will help you and your family understand your dialysis options. Learn more about treatment options and find what works best for you.

Conservative Kidney Management

This is an active treatment choice to protect your remaining kidney function as long as possible, with no plans for dialysis or transplant. Find out more about the resources and emotional support available to you and your family.

Kidney Disease

Living with kidney Failure

More Meatless Mondays for Kidney Health

Author: Dani Renouf, RD, MSc

Although beans, lentils, and other legumes may have received some mixed reviews over the years, specifically in relation to phosphorus and potassium content, there is no better time than the present to embrace vegetarian eating as part of a healthy diet. If you need to limit your potassium intake, check with your dietitian about how much legumes/lentils you can safely consume.

Whether we study blood pressure, heart health, diabetes, or chronic kidney disease, we see time and time again that those who include vegetarian eating as part of their diet tend to have better health outcomes as compared to individuals whose diets are higher in meat-based proteins. As with everything else, variety is the spice of life, and including a combination of foods in your diet is the best way to achieve improved wellbeing, health, and energy.

Choosing from vegetarian proteins which are found in beans, lentils, nuts, and seeds, can help improve kidneyrelated health outcomes by:

1. Reducing the amount of protein lost in the urine

(proteinuria), thereby slowing progression of kidney disease

2. Maintaining a healthy weight and thereby helping improve blood pressure, blood sugar, and cholesterol

3. Increasing fibre intake in the diet and preventing constipation for improved elimination of waste from the body

Try to limit processed vegetarian proteins (veggie burgers, miso, and salted nuts) and instead buy bulk beans, lentils, or chickpeas, soaking them overnight, draining off the water, and then adding them to your favourite recipes. Unsalted nuts can be included in small amounts in most kidney-friendly diets, but portion control is important. Sprinkling of seeds in recipes is a great way of including these nutritious morsels, while watching potassium and phosphate at the same time. It’s always good to check with your dietitian first, if you have questions.

An excellent assortment of vegetarian recipes can be found in the cookbooks Kidney Friendly Cooking (Canadian Association of Nephrology Dietitians) or Spice It Up (Website: www.myspiceitup.ca). One of our favourites from the St. Paul’s Cooking Classes is by Chef Ilan David Wright and Dietitian Anja Webster.

Ingredients:

Serves 6

2 Tbsp Vegetable Oil

1 Medium Eggplant, 1-inch dice

2 Carrots, peeled, ½ inch dice

1 Medium Onion, thinly sliced

5 Cloves Garlic, finely chopped

2 Tbsp Fresh Ginger, grated

2 Tsp Sweet Paprika

2 Tsp Smoked Paprika (optional)

1 Tsp Cumin Seed

2 Tbsp Tomato Paste

1 cup Water

2 cups Cauliflower

2 Bell Peppers, 1-inch dice

1 Zucchini, ½ inch dice

1 cup No Salt Added Canned chickpeas, rinsed and drained

Whole Wheat Couscous

6 cups Boiling Water

3 cups Whole Wheat Couscous

2 tsp Curry powder (optional)

Method:

1. Place dry couscous in a heat proof bowl or pot, pour boiling water over couscous. Cover with plastic wrap or lid tightly. Fluff with a fork after 15 minutes to break up any clumps.

2. Heat medium size pot with oil and fry eggplant until some browning begins. Add onions and carrots and cook together for 3 minutes. Add ginger and garlic and sauté for 1 minute.

3. Add spices, tomato, and water. Bring everything to a boil and gently simmer for 20 minutes uncovered.

4. When carrots and eggplant are tender, add peppers, zucchini, and chickpeas. Simmer for approximately 10 minutes or until all vegetables are knife tender.