Living
KIDNEY Fall 2020 • Volume 13 • Number 2 • kidney.ca
A PUBLICATION OF THE ONTARIO BRANCH
Connecting in quarantine
what’s inside
FALL 2020
FOUNDATION/FUNDRAISING 3 New Times, New Ways to Serve 9 David Ayres Steps In 9 Change is in the Air 10 Supporting Our Mission SERVICES AND SUPPORT/MEDICAL RESEARCH 5 Peer Support—You’re Not Alone 6 Virtual Reality 7 $2 Million Committed to Diabetic Kidney Disease Research
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PERSONAL STORY 4 Brenda’s Story 8 Saverina’s Story LIFESTYLE/FOOD & NUTRITION 11 Perspectives on the Pandemic
8 Cover: This year’s walk looked different. Sharon Biskaborn and her family walked in London. Photo credit: Amy Biskaborn
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©2020 Kidney Living, the contents of which is subject to copyright, is published twice a year. Reproduction in whole or in part, in written, electronic or any other format, without prior written permission, is strictly prohibited. For more information, contact Trish Reynolds, Editor at trish.reynolds@kidney.ca or 1-800387-4474 Ext. 4981.
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EDITORIAL
New Times, New Ways to Serve by Trish Reynolds
The Kidney Foundation of Canada, Ontario Branch 2020 - 2021 Board of Directors Craig Kerr, President Richard Bernreiter Mauro Burri Charles Cook Chris Costanza Joanne Hagger-Perritt Alan Hui Michael Mastronardi Dr. Norm Muirhead Greg Robbins, Past President Teresa Roberts Mary-Pat Shaw Marlene Smith Sonya Solman Susan Tkachuk Terry Young Executive Director Anthony Tirone Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 kidney.ca
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he last few months have been life-changing in so many ways, as we’ve all strived to adapt to our new reality. In July, we asked people affected by kidney disease or living with a kidney transplant from across Canada to participate in a survey about how the COVID-19 pandemic has affected them. Among the most noteworthy findings is that the vast majority of respondents reported experiencing feelings such as anxiety, depression or exhaustion since the pandemic began. We remain committed to supporting the kidney community through this difficult time. Our peer support programs are designed to provide emotional support and resources to help people live well with kidney disease. In Ontario, we transitioned face-to-face peer support group meetings to virtual meetings in March, resulting in greater opportunities for Ontarians to connect with others from across the province (see more about peer support on page 5). In addition, the financial impacts of the pandemic caused additional stress and hardship on the families we strive to serve. Demand for The Kidney Foundation’s short-term financial assistance program has soared in some regions. There have been increases in requests for assistance with transportation and the cost-of-living expenditures. We’ve also sought new ways to answer questions and provide valuable information in an online format. Webinars over the last year covered Covid-19 related subjects, including: Your Renal Diet; Kidneys and Coping: Ask Your Social Worker; Transplant Questions Answered, and Dialysis Questions Answered. Recordings of all of our webinars are available on our website at kidney.ca/ Webinars. While we’ve pivoted to deliver our programs in new ways to meet the increased need, we’ve also sought new ways to fundraise. (See more about how we’ve adapted our fundraising to support our mission on page 10). We also transitioned the annual Kidney Walk to a virtual event. The kidney community gathered online on September 27 for our virtual opening ceremonies. Participants walked in their communities with their families and raised more than $660,000 to support critical programs and services. We continue to listen and learn as we strive to meet the changing needs of our community. Every decision we make will continue to be patient-centred. We can’t do what we do without your support. Thank you. Fall 2020 / Kidney Living / 3
PERSONAL STORY
Brenda’s Story
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How I stayed positive waiting for a transplant during the COVID-19 pandemic by Heidi Westfield
was diagnosed with kidney disease in 2003. About six years later, doctors thought I should go on dialysis, but I wasn’t ready to take that step. I still felt really great. In 2014, I got sick, my ankles swelled up and I ended up in the hospital emergency room. At that point, my kidney function was very low and I had to start dialysis. I started hemodialysis treatments in the hospital. At one point I was offered peritoneal dialysis, but my living space at the time was not suitable. It was around then that I connected with The Kidney Foundation’s Peer Support program. I had a really good experience. The Program Coordinator was very positive, uplifting and encouraging. The value of Peer Support for me, is that there is less fear of the unknown. The support I received helped provide a better understanding of what is going to happen on dialysis and with a transplant. They gave me books to read on kidney disease, and I learned a lot. I had three friends offer to donate a kidney, but it didn’t work out. They were not considered to be healthy enough for the transplant surgery. In the following years there were other kidneys that became available, but they were not a good match for me. Finally, this past May in the middle of the COVID-19 pandemic I had a kidney transplant. I was so excited! While I had some complications, I am starting to feel better. I determined in my heart that I would not get COVID-19! I rely heavily on my Christian faith, and that has helped me get through some difficult times. I would like to help others by volunteering as a Kidney Connect volunteer and share my experiences. Right now, I am still recovering from the transplant and often feel tired in the evenings. I am hoping that maybe in a month or two I will feel more like myself. I can go out on walks now, but am not as strong as I would like to be. Having a kidney transplant was a good experience overall, and the new kidney has changed my life.
S tay connected
Our e-newsletters help you stay connected with what is happening in the kidney community. Receive expert insights and health information, plus discover new ways to get involved by learning what is being done to raise awareness and help reduce the burden of kidney disease. Sign up today at https://kidney.ca/Newsletters or email ontario@kidney.ca.
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SERVICES AND SUPPORT
Ontario Branch
Peer Support—You’re Not Alone Avoid the feeling of isolation, talk to someone who understands. The COVID-19 pandemic requires many of us to go without our usual social interactions, leading to increased feelings of isolation and anxiety. Whether you are recently diagnosed, on dialysis, working toward a transplant, or are a donor or loved one, at Kidney Connect Peer Support you’ll find others who share a similar experience. The Kidney Foundation’s Peer Support program is delivered in several different ways. Support is offered one-on-one by phone with trained volunteers. Our volunteers come from all walks of life; some are on hemodialysis, some peritoneal dialysis, some are transplanted. They have different cultural backgrounds and all have their own unique journey with kidney disease. Group support meetings, offered monthly by phone or video chat, are traditionally organized by hospital programs, but you are welcome to join the meeting that best fits your schedule. There are no geographic boundaries; everyone is welcome. For those who prefer to connect online, KidneyConnect.ca provides a safe space to talk to others online. Volunteer moderators help to make sure the site is a welcoming place for members to share their experiences and questions. A variety of groups offer opportunities for youth and young adults to connect. These past extraordinary months have underscored the need to provide peer support in meaningful ways that meet the needs of Canadians affected by kidney disease no matter where they are in their journey. We are here to support you, now, more than ever. Call or email our Programs team for information about group meeting registration or to arrange a peer support connection: 1.866-390-7337 or email ontario.programs@kidney.ca.
You’re not alone. Speak to a peer support volunteer who understands what it’s like to live with kidney disease.
We’ve been there too.
1599 Hurontario St., Ste. 201 Mississauga, ON L5G 4S1 1-800-387-4474 • 905-278-3003 ontario@kidney.ca
African-Caribbean Kidney Association 1-800-387-4474 president@acka.ca 1-800-387-4474 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 ext. 4977 shukyu.fong@kidney.ca Durham Region 1-800-387-4474 Eastern Ontario 613-724-9953/1-800-724-9953 melissa.forster@kidney.ca Hamilton & District 1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca Kingston 613-542-2121 katie.kyte@kidney.ca London & District 1-800-387-4474 ext.4860 rizwana.ramzanali@kidney.ca Niagara & District 1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca North Bay 1-800-387-4474 Northern Superior 807-624-2680 ontario@kidney.ca Sarnia-Lambton 519-344-3462 elaine.hayter@kidney.ca Sault Ste. Marie 705-949-0400 tannis.mcmillan@kidney.ca Timmins-Porcupine 705-365-7492 timmins.president@kidney.ca Waterloo – Wellington & District 1-800-387-4474 ext. 4966 tracey.babineau@kidney.ca Windsor & District 519-977-9211 erika.muscat@kidney.ca
kidney.ca | 1 866 390 7337 kidney.ca
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ADVOCACY SERVICES AND SUPPORT
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Virtual Reality Tips on navigating a virtual medial appointment
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any physicians and other healthcare practitioners are now providing care through virtual phone or video calls. Virtual appointments can help keep you and your doctor safe while still being able to address many of your healthcare needs. Before your appointment Plan your space. Choose a location that is private and quiet with minimal background noise. If you are having a video appointment, make sure there is ample light so that your doctor can see you clearly. If you are video calling your doctor and you need to show them a part of your body, wear loose-fitting clothing. Have on hand any devices your doctor may have recommended. This might include a thermometer, bathroom scale, or a home blood
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pressure monitor. Gather the information you will need for your appointment: current medication list, pharmacy name, location, phone number. Also take note of any healthcare data such as recent blood pressure readings or glucose levels. Prepare for your appointment: Write down a list of your questions, concerns and have a paper and pen ready to take any notes. During your appointment The phone call from your physician or healthcare provider may come in as a blocked number. Let your doctor know if someone else is with you and introduce them. Give yourself extra time before and after your appointment time as the call may come in a bit before or after your scheduled time. Keep an open mind. Although the
appointment might feel different, try to treat your appointment as a regular visit. Ask questions. Schedule follow-up appointments if needed. Technology tips Choose whether you will use a smartphone, tablet or computer. Ensure that your phone or computer is charged and that you have access to a reliable connection. Video calls work best with a highspeed internet connection. If possible, consider using a wired connection. When booking or confirming your appointment, ask which applications or programs your healthcare provider will use and download them before your session (if it is a video-based appointment). ď Ž
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MEDICAL RESEARCH
$2 Million Committed to Diabetic Kidney Disease Research
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100 Years of Insulin: Accelerating Canadian Discoveries to Defeat Diabetes
he discovery of insulin as a treatment of diabetes is the most celebrated Canadian medical discovery of the 20th century. The scientific breakthrough, which would dramatically improve the lives of millions of people affected by diabetes and revolutionize the treatment for the fatal disease, earned Drs. Frederick Banting and J.J.R. Macleod, of the University of Toronto, the Nobel Prize in 1923. In 2021, Canada will mark the 100th anniversary of the landmark discovery. To commemorate this landmark event, the Canadian Institutes of Health Research Institute of Nutrition, Metabolism and Diabetes (CIHR-INMD) is launching a large-scale strategic research initiative called 100 Years of Insulin: Accelerating Canadian Discoveries to Defeat Diabetes. This strategic research initiative will include a focus on diabetes’ complications, including kidney disease. “We are pleased that The Kidney Foundation is able to collaborate with CIHR to create a specific funding pool on diabetic kidney disease,” said Elizabeth Myles, The Kidney Foundation’s National Executive Director. “We know that diabetes is a leading cause of kidney failure and that, conversely, kidney failure often leads to diabetes. The hope is that further research into this connection could result in improved treatment options for diabetic kidney disease.” The Kidney Foundation and CIHR will each contribute $1 million over five years, starting in 2022. CIHR-INMD and The Kidney Foundation have a long-standing successful relationship and have worked together on developing and funding the world-class Kidney Research Scientist Core Education and National Training program (KRESCENT) for the last 15 years.
The need for more research Since 2000, the number of Canadians with diabetes has doubled. In 2019, 11 million Canadians were living with prediabetes or diabetes. The costs of treating the disease have raised from $14 billion in 2008 to just under $30 billion. These numbers are expected to increase largely as a result of the aging population and increasing obesity rates.i Up to one half of people with diabetes will show signs of kidney disease during their lifetime.ii Moreover, diabetes is the leading cause of kidney failure in Canada with close to 40 percent of new dialysis patients having diabetes.iii Between 1990 and 2012, the number of deaths attributed to diabetic kidney disease rose by 94 percent.iv Diabetes Canada. (2018). Diabetes 360o: A Framework for a Diabetes Strategy for Canada. https://www.diabetes.ca/DiabetesCanadaWebsite/media/Advocacy-and-Policy/Diabetes-360-Recommendations.pdf ii McFarlane, P., Cherney, D., Gilbert, R. E., & Senior, P. (2018). Chronic Kidney Disease in Diabetes. Canadian Journal of Diabetes, 42, S201–S209. https://doi.org/10.1016/j.jcjd.2017.11.004 iii Canadian Institute for Health Information. (2019). Annual Statistics on Organ Replacement in Canada: Dialysis, Transplantation and Donation, 2009 to 2018. https://www.cihi.ca/sites/default/ files/document/corr-snapshot-2019-en.pdf iv Lozano, Rafael & Naghavi, Mohsen & Foreman, Kyle & Lim, Sangjoon & Shibuya, Kenji & Aboyans, Victor & Abraham, Jerry & Adair, Tim & Aggarwal, Rakesh & Ahn, Stephanie & Alvarado, Miriam & Anderson, H & Anderson, Laurie & Andrews, Kathryn & Atkinson, Charles & Baddour, Larry & Barker, Suzanne & Bartels, David & Bell, Michelle & Memish, Ziad. (2012). Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: A systematic analysis for the Global Burden of Disease Study 2010. The Lancet. https://doi.org/10.1016/S01406736(12)61728-0 i
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PERSONAL STORY
Saverina’s Story Staying positive during the pandemic
by Heidi Westfield
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averina keeps a close eye on her bloodwork these days. She hopes to stay off dialysis while she waits for a kidney transplant from one of her parents. The 22-year-old who lives in Hamilton, Ontario was born with smaller-than-average kidneys. Her current renal function is about 10 percent—low enough to require regular monitoring by her medical team. She was on course for a live transplant, but her surgery was delayed due to the Covid-19 pandemic. Doctors are watching her creatinine levels to ensure that they don’t get too high. “I am still feeling really good,” she says, noting that she hasn’t experienced any of the usual symptoms of low kidney function. She doesn’t feel fatigued, or take any blood pressure medication. “My surgeon is always shocked when he sees how healthy I look.” Growing up with a serious kidney condition has not slowed Saverina down. In her early teens, she produced her own blog and at 16, she hosted a cable television show in Hamilton. Living with kidney dysplasia, she feels, has helped her become stronger and more determined. “I am kind of thankful for [the health condition] in a way, because it has made me the person I am. It helps me see life differently. I think it is all about perspective. You can sit around feeling bad for yourself or you can take action.” One of the ways she is taking action, is with a performance and lifestyle coach. The coach provides advice on sleep, nutrition and exercise. She says that having this kind of help has made a huge difference: “Every time I take his advice, I lower my creatinine and I am back on track.” Saverina also believes that staying focused on work helps lift her mood. She has carved out a niche in sports-oriented public relations, and counts a number of former and current NHL players as her clients. Last February, she was watching a Toronto Maple Leaf’s game when a back-up goaltender was brought in. David Ayres, a kidney transplant recipient, took to the ice. Seeing David on TV, performing at such a high level after a transplant, gave Saverina new hope for the future. “I saw his story and reached out to his wife, Sarah, and I told her about my experience with kidney disease,” she recalls. She has stayed in touch with the couple, and helped David connect with The Kidney Foundation. Together, they collaborated with the Foundation and leveraged their networks to help raise $90,000 for an emergency fund to help kidney patients during the pandemic. Saverina’s friendship with the Ayres family has helped her feel less nervous about her own health, and the procedures she may face in the months ahead. “Seeing David inspired me, and made me more positive about life post-transplant.”
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THE FOUNDATION OF KIDNEY CARE
Change is in the Air CTV News
David Ayres steps in Backup goaltender helps raise crucial funds for Canadians affected by kidney disease As soon as he was made aware of the urgent circumstances that many kidney patients were facing, David Ayres was ready to lend a hand in any way he could. Ayres, who rose to fame in February as the first emergency backup goaltender to record a win in the history of the NHL, has first-hand knowledge of the daily plight of those affected by kidney disease. “As a kidney patient and transplant recipient, I know that coping with dialysis treatments and its effects are challenging in the best of times,” states Ayres. “Now that our world is turned upside down due to the pandemic, I can only imagine what patients and their families have to deal with.” During a game held in Toronto between the Carolina Hurricanes and the Toronto Maple Leafs, Ayres was called in as emergency goalie after both Hurricanes’ goaltenders were injured. Even though his performance led to a defeat for the Maple Leafs, hometown fans were won over by the Ontario resident’s Cinderella story, cheering him on all the way. The Kidney Foundation Emergency Fund Campaign, spearheaded by Ayres, raised more than $90,000 to help remedy the situation.
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StoryBlocks.com
he Kidney Foundation celebrated the career of Jim O’Brien at a virtual retirement celebration on October 2, 2020. Jim provided tremendous leadership to the Branch over the past 13 years. The Ontario Branch moved from a time of struggle to a time of stability. We wish Jim the very best as he begins this new chapter. His legacy will resonate throughout the Foundation and will continue to be felt by those affected by kidney disease for years to come. Anthony Tirone was appointed to the position of Executive Director of the Ontario Branch. Anthony first became involved with the Hamilton Chapter as a volunteer in 1986. He joined the Foundation as a staff member in 2005 and has worked tirelessly at the Branch level for the past 15 years. Anthony has taken on active roles at all levels of the Foundation over the years, demonstrating his commitment to the Foundation and the community that we serve. Anthony continuously encourages the Foundation to be donor-centered, patient-focused and transparent in everything that we do.
Explore Kidney Community Kitchen and start cooking! There is no standard kidney diet and managing your kidney diet needs can be challenging, but it’s not impossible. This online resource includes: Kidney-friendly recipes Kidney diet fact sheets Articles and tips from Renal Dietitians
kidneycommunitykitchen.ca kidney.ca
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FUNDRAISING
Supporting Our Mission New ways to support Canadians living with kidney disease
Looking back, it’s hard to remember life before the pandemic. COVID-19 changed our world in an instant. The crisis simultaneously created an increased demand for help and support for those affected by kidney disease and an unexpected decrease in revenue to fund those vital services.
by Trish Reynolds
“W
ith so many of our usual fundraising activities suspended or delayed, we quickly began to explore new opportunities for our supporters to contribute to our mission,” said Anthony Tirone, Ontario Branch Executive Director. The David Ayre’s Emergency Fund launched in April was a game changer. The funds received in those early days of the pandemic provided much needed support for shortterm financial assistance at a time when patients were facing increased challenges in finding reliable, accessible transportation to get to dialysis. (See more about the David Ayres emergency fund on page 9). In May, we launched our first 50/50 draw with much success. Executive Director, Anthony Tirone recalls making the winning phone call —“it honestly was one of the best calls I’ve ever made,” said Tirone. “At a time when there was so much anxiety and uncertainly, to share such good news… it made my day.” For Caroline, a two-time transplant recipient, the call came at a time when she could help family from England who were dealing with the effects of the pandemic. “I knew which day the 50/50 raffle was being held, and when I got a call from The Kidney Foundation, I had an inkling it had something to do with the draw. My first reaction was complete surprise. I have never won anything before in my life. I bought the tickets simply to support The Kidney Foundation,” said Caroline. A second draw was held in October, with the final prize totaling more than $26,000. The final draw for 2020 will launch on November 18 and the winning ticket will be drawn on New Year’s Eve. Learn more about The Foundation’s 50/50 draw at kidney5050.ca.
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With the safety of our community top of mind, we made the decision in the spring to transition our signature Kidney Walk to a virtual event. Participants were asked to join with their family or social bubble and walk within their own neighbourhoods. The Ontario walk community gathered on September 27 for a virtual opening ceremony. The online celebration featured walkers from all walks of life from different parts of the province. Walk participants were encouraged to share their images and videos online. It was truly a memorable day. “Our community embraced the change and took steps to show their loved ones they’ve got their back,” said Daniela Piotrowski, Senior Regional Manager of Community and Fund Development. “Over $660,000 was raised thanks to the commitment and dedication of so many walkers and their supporters, providing crucial support for programs and services.” What’s next? An online auction will kick off in November just in time for the holiday season, providing yet another way for our supporters to show they care. Silent auctions have been a long-standing tradition at events such as our annual gala and community special events. Custom portraits, sports memorabilia, jewellery and experiences are just a few of the items up for bid. Prefer to give a gift that keeps on giving? Choose one of our “Fund a Need” packages and support research, peer support, short term financial assistance or educational materials. Check out the auction at kidneyfoundationauction.ca. The way we raise funds is changing, and every dollar does make a difference. We remain steadfast in our commitment to support Canadians living with kidney disease through research, advocacy and programs to help them live well. We are grateful to the many donors who have stepped up their efforts to help support Canadians affected by kidney disease. kidney.ca
COMMUNITY HIGHLIGHTS
Perspectives on the Pandemic COVID-19 has affected us all
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eople who have a chronic illness such as kidney disease are at an increased risk of becoming very ill. These fears are real—and the worry and uncertainty can cause stress and anxiety. We asked a dialysis patient and the mother of a transplant patient to share their perspective on the last few months. “As a parent of a teen daughter on immune suppressants, life during Covid has been extra challenging. Alexis, 18, has FSGS—a rare kidney disease resulting in kidney failure. She started dialysis at age 16 and last October, I donated a kidney to her. When everyone else started to take precautions and restrictions went into place in March, we had already been living with limited contact: no travelling except for medical reasons. It felt like she was already missing out on a normal youth. As a transplant recipient, Alexis is at extra risk because of her compromised immune system. The immune suppressants she takes help prevent rejection of her new kidney. Even as the rest of the world goes back to normal, we will continue to try to be as a safe as we can. A friend of ours made us a sign to place at our front door reminding people not to come in if they are experiencing any symptoms. Please wear a mask, limit social gatherings and continue to be mindful. Many people, like Alexis, are very vulnerable. We’ve already been through so much to keep her healthy.“ Rhonda – Mother of a Transplant Recipient, Living Donor
Photo credit: Rhonda Braun
Do you have a story to share? How has COVID impacted you? Tell us about your experience with kidney disease. Email ontario@kidney.ca or visit www.kidney.ca/ shareyourstory kidney.ca
“In the early days of the pandemic, when the rest of the world was trying to stay home, I still had to leave my house four times a week to head to the hospital for my dialysis treatments. These treatments keep me alive until I receive a kidney transplant. It was and still is stressful every time I walk into the hospital. There’s screening as I enter the hospital with questions being asked and temperature checks. Initially no masks where given to patients. However, since the numbers increased, it is now mandatory for all patients to wear a mask for the duration of their hospital visit; so, in my case that’s four hours of wearing a mask. It’s not easy, but I can’t take a chance on either myself or my family becoming sick. The anxiety and mental toll from the pandemic have become exhausting. I know that I am doing my best to stay safe while being diligent in wearing a mask, washing my hands and social distancing from others. “ Sadia, Hemodialysis Patient We are here to help and support you through your journey. Sometimes sharing your feelings and learning that you aren’t alone in your experience can help. Through our Support Groups and one-on-one peer support calls, we know that many of you are feeling stressed and concerned about your health and safety. We are here for you. The Kidney Foundation’s Information and Referral service provides access to basic information on kidney disease, treatment options and referrals to community resources where appropriate. Call (toll free number) 1.866.390.7337 or email ontario.programs@kidney.ca. Fall 2020 / Kidney Living / 11
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