KidneyNews
WINTER 2018 VOLUME 19 • ISSUE 3
WHY YOU WALK We all have our reasons for why we get involved with the Kidney Walk. Some walk for family members or friends who donated the kidney that saved their lives. Some walk to raise awareness of the importance of kidney health. Some are on dialysis. Some walkers are healthcare workers who walk in support of their patients. Some donated a kidney. And some provide in-kind or financial sponsorship to support the work of The Kidney Foundation and help raise awareness of the need for more organ donors.
Kidney Walk Celebrates Another Success There’s a famous Chinese proverb that says, “A journey of a thousand miles begins with just one step.”
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— A grateful mom
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For the BC & Yukon Branch, and the Kidney Walks in particular, their first step was taken eleven years ago and their journey has covered much more than 1,000 miles. Thanks to the Sons of Scotland, a group of kidney supporters who organized the first Walk around Trout Lake in 2007 and launched the yearly event, Kidney Walkers have travelled 26 million kilometers and raised over $2.5 million. Jim, a member of the Sons of Scotland, says “The Kidney Walk is the number one charity of the Sons of Scotland. I wouldn’t be anywhere else today.” Jim’s dedication was mirrored this year by 4,500 other walkers, volunteers and sponsors in 16 locations around BC and the Yukon who laced up their favourite shoes, slipped on their Kidney Walk shirts and set out to make some noise about kidney disease. The total amount raised this year is $317,000 and counting!
I walked to thank the donor who gave the kidney that saved the life of my 2 ½ year old daughter 16 years ago.”
May 25, 2015 was the day I stopped just surviving and started living again.” — Samuel Veillet who walked to thank his dad for donating a kidney to him
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I walked to thank The Kidney Foundation for the programs and services they provide to people with kidney disease.” — Kelowna’s Patrick Ng has Chronic Kidney Disease & has been on hemodialysis for over two years
Kidney Walkers have travelled 26 million kilometers and raised over $2.5 million But the Kidney Walk’s growth and success would not have happened without the incredible support and efforts of our Kidney Walk volunteers, participants and sponsors. You reach deep within your networks to raise those critical dollars, you step up and sponsor Kidney Walks in your community, you set up the tents, you take down tents, you rally your teams, you hold the beer & burger nights: you know who you are! To each and every one of you – THANK YOU! ■
The Kidney Foundation of Canada, BC & Yukon Branch 200 – 4940 Canada Way Burnaby, BC V5G 4K6 Phone Toll Free: 1-800-567-8112 Fax Toll Free: 1-800-667-8871
kidney.bc.ca
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The Team Kidney Sisters walked for their mom who donated a kidney to their sister. " — Team Kidney Sisters
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To all volunteers, sponsors, and participants who made 2018 Kidney Walk a big success. THANK YOU!
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WHY YOU WALK continued from page 1
Paula Hahn is the Regional Director, Renal Services at Interior Health Authority. Her renal team had groups participating at several locations for this year’s walk. She says, “For me personally, I walked to raise kidney health awareness, to encourage conversation about organ donation, and most importantly, to support the patients and families we serve.” Paula adds that her team walks to advocate for their patients – people that they know and work with all the time. For Abbotsford nephrologist Dr. Susan Cooper, 2018 was her first Kidney Walk, but she says, “It won’t be my last.” Dr. Cooper joined this year’s walk to support one of her transplant nurses who, herself, has had a transplant. Now Dr. Cooper plans to go every year. “It’s a privilege to work here and to have the opportunity to support my patients,” she says. “But I’m also glad to be able to give back to The Kidney Foundation in this way. The Kidney Foundation does so much for the medical profession.” Ken Chahal, the owner of AdExperts in Surrey says, “I’m walking to thank my daughter for giving me the gift of life in 2013 and to represent my company, AdExperts, a very grateful financial supporter of the work of The Kidney Foundation.” ■
THE KIDNEY WALK GETS SOCIAL #KIDNEYWALKCANADA #KIDNEYWALKBC #BeADONOR
@KidneyBC A HUGE THANK YOU to EVERYONE who participated in Kidney Walks across BC & Yukon yesterday. From volunteers to participants to donors to sponsors - we couldn't do it without you! #KidneyWalkCanada
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@bambi_claire Some kidneys just kidding around #kidneywalkcanada #yyj #yyjevents
@vernonmorningstar The Kidney Walk took place this morning at Polson Park in Vernon. Together, the Okanagan community raised almost ten thousand dollars to donate towards kidney research in Canada. #kidneywalkcanada
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WINTER 2018 VOLUME 19 • ISSUE 3
ONLINE PETITION: Are you in favour of organ donation in high school curriculums?
100 550
signatures in 5 hours signatures in 14 days
Organ Donation as Part of BC’s School Curriculum It is the dream of KFOC volunteer and community advocate Hailey Cheema that the importance of organ donation be taught in all high schools in British Columbia. Organ Donation should be part of the curriculum, just like sex ed or the war on drugs is. And anyone who has ever worked with Hailey knows, when she has a dream, it usually becomes a reality. According to Hailey, a fourth year SFU science undergrad, people who donate their organs are heroes. They save lives. As a young person herself, Hailey knows that the future of successful organ donation rests within the hands of our youth. What group of people is more susceptible to identifying with local heroes? And to new ideas? Who better to start movements and bring about change than today’s youth? Armed with their social media platforms and desires to make a difference, our youth, the upcoming leaders in our community, are where the action is.
Once set on fire about the importance of organ donation, they will bring their enthusiasm home to ignite conversations in their homes, amongst their friends, and within the community. They will care. They will grab the pamphlets at the ICBC office when they’re getting their brandnew drivers’ licences. All they need is to be exposed to the subject.
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And exposed they will be. The plan to get organ donation included in high school curricula started this past April with a change.org petition Hailey posted online asking people to sign up if they were in favour of having organ donation included in the high school curriculum. Within 5 hours she had 100 signatures, and 14 days later, the list hit 550. This resulted in a call from Global TV’s Aaron McArthur who wanted to do a story about Hailey’s initiative, which led to an invitation from the Canadian National Transplant Research Program in Ontario to become a research partner. Since then Hailey has been in touch with the honourary Surrey City Counselor Mary Martin, a strong community advocate who said adding organ donation to the school’s curriculum “has to happen.”
The plan is to launch a pilot program in Surrey, the largest school district in the province. Hailey will be presenting to the City of Surrey Diversity Advisory Committee in the near future to understand how she can further implement this education in the community and is confident all will be a go during NOTDAW in the Spring, 2019. The curriculum material Hailey believes could be largely adapted from similar, successful programs happening in Ontario and the UK, and could include the concept of organ donation, conversations about the impact of organ donation and the barriers to consent, and worksheets and letters home to parents. The outcomes from this pilot could then be measured in a research project which would provide the right framework and information needed to roll the pilot out province-wide. Hailey and the BC & Yukon Branch have already had initial discussions, including the opportunity to work together and possibly have this initiative form part of the Branch advocacy strategy. Hailey’s dedication to supporting the work of The Kidney Foundation started in honour of her late grandfather Kehar Singh Cheema who died from kidney disease when she was 13. Since 2012 and in learning about the Kidney Foundation, she has worked tirelessly on many fronts to increase awareness of the importance of organ donation and encourage everyone to sign up. Her many achievements include participating in BC Kidney Walks, raising over $15,000 in 3 years, hosting community conversations with the public about organ donation, approaching Victoria MLAs, including the MLA of New Westminster/Minister of Mental Health Judy Darcy, to add organ donation to their political platforms, participating as a Renal Ambassador at Royal Columbian Hospital and working as a nephrology research assistant on a project surrounding transplantation with Dr. Jag Gill, throughout both Fraser Health and Vancouver Coastal. Hailey is also the recipient of the 2017 Dr. Jack Uppal Community Service Award and the 2018 Faculty of Health Science Outstanding Community Service Award. There is little doubt that Hailey Cheema’s dream of adding Organ Donation to the curriculum in all BC high schools will come to pass. Thank you, Hailey, on behalf of all the patients in BC, and possibly across the country, who are on very long waiting lists for organ transplants. ■
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An Epic Adventure of a Lifetime – YOUR lifetime “I just can’t stay away,” says Kate Chong, kidney transplant recipient and BC resident.
Kate’s first Kidney March was in 2012, one and a half years after she was diagnosed with kidney disease. She saw an ad for the Kidney March on Facebook and thought, “How cool is this?” She admits she was terrified at the same time, but when her mom offered to register for the Kidney March too, she was in. And she still is. Five Kidney March adventures later, Kate (and her mom) can hardly wait to go again. What is Kidney March? It’s epic. It’s a movement. It’s folks who believe failure is not an option. It’s a 100 km walk over 3 days. Calgary to Kananaskis Country and back. The Kidney March is quite simply, THE kidney event of the year – and has raised nearly $6 million to date to support kidney disease prevention, research and organ donation initiatives. Every September, Kidney March draws hundreds of people from across Canada to gather for the experience of a lifetime. Kidney patients, families, friends, nephrologists, nurses, social workers, and members of the public come together and walk shoulder to shoulder to do the most they can possibly do for kidney disease and organ donation.
In 2018, 255 marchers & 140 crew took part with 11 marchers & 4 crew being from BC. But just watch these numbers grow. The Kidney March, which was initiated by the Southern Alberta Branch of The Kidney Foundation, celebrates its 10 year anniversary in 2019, and standing along side them will be the BC & Yukon Branch and the Atlantic Branch who are joining forces with the Kidney March in 2019. And in the coming years the Kidney March could be a pan-Canadian movement! The Kidney March will complement our signature Kidney Walk, offering two different experiences and opportunities to join our kidney family. “Having my Branch officially on board with Kidney March is so exciting,” says Kate. “I am so inspired and pumped and ready to start recruiting new Marchers.” As Kate explains, Kidney March doors open wide to embrace every new Kidney March family member. “When you register a huge support team will wrap their arms around you, offering tips, tools, compassion and encouragement. I was utterly amazed at how well organized the Kidney March is; they have thought of everything: gourmet meals, entertainment, hot showers, and massages, medical tents, merchandise store and the list goes on.”
KidneyNews ONE STRONG VOICE
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What is Kidney March? It’s epic. It’s a movement. It’s folks who believe failure is not an option. It’s a 100 km walk over 3 days. Calgary to Kananaskis Country & back. Kate Chong, Kidney Transplant Recipient
advance. You learn a lot about yourself in these sorts of situations. Just when you think you can’t go any further, you somehow do. Most people find they are a lot tougher than they think, and don’t forget, you have a community of support - fellow marchers, volunteers and crew - cheering you every step of the way.” The Kidney March’s top priority is to raise funds to improve the quality of life for Canadians who are struggling with kidney disease. All Marchers must raise $2,200, many raise much more. “But that’s not impossible either” says Kate. “The Kidney March team offers a ton of support – providing ideas on how to fundraise. I know at first I was a bit afraid to “ask” my network to support me. But what I found surprised me. People were moved by the sheer challenge of the Kidney March and were more than willing to offer their financial support.” For Kate, Kidney March means many things, including being a real family affair. Her mom has walked along with her five times. And for four marches, Kate’s dad has been part of the crew. “He’s one of the guys who help set up the tents, tables, snacks, and make sure the pit stops are ready for us. The March wouldn’t be possible without the fabulous crew members who volunteer their weekend to help out.” “But above all it is an unforgettable journey. The beginning of life-long friendships formed around a strong passion, and a drive to make a difference.” If you want to join an epic movement, and make the biggest difference you’ve ever made in your life, visit kidneymarch.ca. ■
Imagine how far we can go when failure is not an option. Just think about it.
Kate continues with these words of wisdom, “I did not know what to expect in year one. I was a little worried about the physical challenge of walking 100 km in 3 days, it seemed rather daunting. But you don’t have to be an athlete, most participants aren’t. There are training walks, and lots you can do to prepare in
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WINTER 2018 VOLUME 19 • ISSUE 3
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Remembering Amanda Poch Earlier this year we said goodbye to one of our kidney community family members, Amanda Poch. We sent our heartfelt condolences to Board member, Guy Lapierre, on the loss of his amazing partner. As the holiday season fast approaches, it seemed like the perfect time to reflect and remember this amazing young lady who had a profound and positive impact on so many. Amanda was a dedicated volunteer and passionate advocate for organ donation, who among her many contributions, spearheaded an innovative province-wide initiative called “Live then Give” to celebrate her 10 year transplant anniversary. After her official media launch on the steps of the BC Legislature in 2016, she travelled the province in her branded “Live then Give” RV, speaking at community events, with local dignitaries, at schools, and fundraisers and the list goes on. Her dedication and initiative for the cause was remarkable and earned her the Kidney Foundation’s Community Outreach award in 2016. ■
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Amanda had an inspiring story to share & a dream to make a difference. She is greatly missed."
NEWS IN BRIEF
Thank you for Helping Us Warm 6,600 “soles”! We did it! Thanks to everyone who voted and shared our Warm the “sole” campaign, we made the top 50 in the Aviva Community Fund small idea category. That means we are receiving $10,000 to purchase socks for ALL 3,300 dialysis patients in BC, plus, thanks to a partnership with Your City Sports, 3,300 homeless in BC will also have their “soles” warmed! Staff from our branch, volunteers and kidney patients, will come together to make very special deliveries across the province, warming one “sole” at a time! Check out our social media and upcoming episodes of PLUGGED IN for more updates. ■
NEWS IN BRIEF
A Unique Volunteer Opportunity
Have you ever wanted to know how kidney researchers do what they do?
Have you ever wondered about getting involved in a clinical trial?
Have you ever wanted to give feedback to kidney researchers about what's important to you?
If you answered YES to any of the above, then read on. You may be interested in volunteering with the CanSolve Regional Patient Network.
CanSolve is a $40 million patient-driven research project with 18 investigators led by BC’s own Dr. Adeera Levin. There’s an opportunity for a core group of kidney patients, family members, caregivers, kidney recipients and kidney donors to form teams and work together. To become ambassadors for the CanSolve research project and help others become involved. To engage personally with kidney researchers and other kidney patients through specific webinars. To make a difference by providing personal input and perspective. This may not be for everyone. But it is for those who have a curiosity or passion for understanding the strides being made in kidney research – and how they can be involved with a kidney network of like-minded patients. If you are remotely interested and want to know more, please contact: Pia Schindler at pia.schindler@kidney.ca. ■
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KidneyNews WINTER 2018 VOLUME 19 • ISSUE 3
A Special Camp for Kids Made Possible Thanks to a Group of Special Nurses For a week every August, Camp Latona on BC’s beautiful Gambier Island morphs into the go-to place for up to 50 kids with kidney disease and organ transplants. Funded by The Kidney Foundation, BC & Yukon Branch and the Children’s Organ Transplant Society, this seven day get-away gives children and youth with special medical needs outdoor adventures while having their safety and medical well-being fully cared for by registered nurses. Water-skiing, kayaking, Sea Safari, crafts, ropes course, swimming, archery, hiking and great food are all part of the week-long adventure. New friendships are made, and summer fun is shared in a safe environment that lets these 8 to 18-yearolds just be kids. One of the other benefits for campers is the personal development that evolves during the week, and the relationships they forge, which are kept alive all winter thanks to their social media apps. The older ones are supportive of the younger ones. They all share experiences and help each other manage their medical conditions. None of this would be possible without the very special care given by the nurses on site, all of whom volunteer their time and often devote some of their vacations to be part of the annual Kidney/Transplant Camp. Lori Paillé, Clinical Coordinator at BC’s Children’s Hospital, has been spearheading the team of 6 to 7 RNs every year since the program started 14 years ago.
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We do it for the kids,” says Lori. “ We know most of the campers from the hospital, and some we meet at camp for the first time and we enjoy seeing them grow and develop year after year at camp. It’s a very rewarding experience."
While it’s a unique get-away from the hospital for the nurses, it’s still a working day for these dedicated volunteers. A nursing station is set up and shifts cover each 24-hour period. The professional care the children need varies, depending on their treatment regimen. Some come with kidney disease, nephrotic syndrome, others with transplants, and some are on dialysis. Throughout the week, the nurses administer the regularly scheduled meds and make sure that no amount of water sports or archery practice comes between their young charges and their healthcare needs. The campers who are on peritoneal dialysis (PD) receive their treatment during their stay at Camp Latona but due to the remoteness of the camp and the specialized equipment (purified water, hemodialysis machines, etc.) those on hemodialysis need to be taken back to BC Children’s Hospital twice during their stay. “It isn’t all work though,” says Kathleen Smiley, a Renal Nurse at BCCH. “Kidney/Transplant Camp gives us a chance to connect with some of the nurses that we don’t see day to day at the hospital.” August, 2018 was Kathleen’s fourth year volunteering at Kidney/ Transplant Camp and she plans to go back next year. “I said yes when I first heard about the camp because I had been a volunteer with Nursing Overseas and the Burn Camp, so I had an idea what to expect,” Kathleen explains. “I keep going back because I know many of these children from the hospital and I love seeing what a positive impact camp has on them.” She’s also glad for the break that Kidney/ Transplant Camp gives the kids’ parents. Kidney/Transplant Camp is a dream week for the kids and a unique way for the nurses to connect with their young patients. ■
A BIG THANK YOU...
from all the kidney kids at Camp to all the nurses who have volunteered their time for the last 14 years, making it possible for us to enjoy a dream week.
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Mark Your Calendars! Save the Date — June 2nd 2019, thousands of KFOC supporters around BC will Walk · Run · Volunteer · Donate to support The Kidney Foundation. The event is perfect for the whole family (including your pets) and all levels of ability. Every step is a giant leap forward in the fight against kidney disease! More details to follow. ■
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Every journey starts with a destination & a single step...
Each day 15 Canadians learn their kidneys have failed. March for three unbelievable days along the foothills of the Rocky Mountains and across the Alberta prairie on an adventure of a lifetime. Every step getting closer to making the biggest difference you’ve ever made in your life. 100KM • September 6 - 8, 2019. FAILURE IS NOT AN OPTION.
CANADA'S BOLDEST EVENT FOR KIDNEY DISEASE AND ORGAN DONATION. KidneyMarch.ca | 1.866.956.2724
We want to hear from you! Do you have a story or an update from your Chapter or community, a tip or a success story you want to share or some feedback for Kidney News? We publish Kidney News twice a year: Summer and Winter issues. To be included in the next issue, please forward any ideas or comments to deborah.tucker@kidney.ca. Thanks!
Are you"kidneying"me? The Kidney Foundation has a TV show about kidney health that’s fun and informative? PLUGGED IN covers all topics important to kidney patients, caregivers, health care professionals, volunteers, supporters and the public-at-large.
Get PLUGGED IN!
Check us out on YouTube and don’t forget to subscribe:
PLUGGED IN also airs on SHAW TV!
• Search Kidney BCY TV
• SHAW TV Channel 4 across BC (check your local listings for days and times)
• Click on any episode— there are over 50 to choose from!
• SHAW Multicultural Channel (Vancouver and Calgary)
• Sit back and enjoy!
• SHAW Direct Canada-wide (3 times daily - check your local listings for days and times)
• Google YouTube.com
• Don’t forget to click on the red subscribe button to receive a reminder when each Now airing across BC on new episode is airing!
Coming up on PLUGGED IN: • Highlights from 2018 BC Kidney Days – the people, presentations and buzz from the renal community • Don’t miss the 2018 Holiday Show! • Ring in 2019 with PLUGGED IN! • PLUGGED IN celebrates Chinese New Year!
Or you can visit us at kidney.bc.ca and click on the PLUGGED IN rotating banner.
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WINTER 2018 VOLUME 19 • ISSUE 3 For example, The Kidney Foundation included three recommendations to government in order to assist kidney patients with this financial burden:
REPORT
• Minimize disparities in accessing medications for people with kidney disease and develop mechanisms to offset costs equitably across jurisdictions. Report findings showed how BC through BC Renal Agency Pharmacy Formulary program provides drug coverage to people on dialysis as does Saskatchewan through its Saskatchewan Aids to Independent Living (SAIL) program, and it called on other provinces to follow these examples, recognizing that those living with kidney failure tend to be part of a lowincome and high-cost population.
The Kidney Foundation’s Report Underscores how Kidney Failure Comes at a High Financial Cost for Many Canadians Including Inequities in Financial Support for Dialysis Patients HIGHLIGHTS PRESENTED AT BC KIDNEY DAYS
• Subsidize transportation costs and expand access to travel grants, particularly for people in rural areas.
The Kidney Foundation of Canada and the Canadian Association of Nephrology of Social Workers (CANSW) partnered to administer a survey entitled the “Burden of Out-of-Pocket Costs for Canadians with Kidney Failure”, and as many of you may be aware, released the findings in a special report publicly earlier this year. Over 1,200 people on dialysis from across Canada were surveyed to determine the extent and impact of financial costs related to kidney failure. This report highlights the devastating burden of kidney disease, exemplified by the fact that 20% of respondents go without food, medication and other basic necessities as they struggle to maintain their dialysis regime. At the same time, this report shines a spotlight on the BC Renal Agency, and its commitment to kidney patients which has made it a leader in kidney care across Canada.
• Consider the financial and health literacy of patients when operationalizing “home first” policies that aim to maximize the proportion of patients on home dialysis therapies.
The Kidney Foundation’s Heather Johnson (Director of Programs, BC & Yukon Branch) and Shannon Fogarasi (Director of Programs & Public Policy, Ontario Branch) presented on “Financial Burden of Chronic Kidney Disease” at BC Kidney Days this past November. For full report and findings go to kidney.ca/burden ■
HAPPY HOLIDAYS & THANK YOU!
2018 Highlights...
As 2018 draws to a close, I wanted to take this opportunity on behalf of The BC & Yukon Branch to wish you and your loved ones a very safe and happy holidays. 2018 has been an incredible year on so many fronts, and it is thanks to our kidney family – our volunteers and supporters – that we have seen such success. Without a doubt, our volunteers and supporters are our most valuable resource. You are the engine that drives our mission forward and we cannot thank you enough for all that you do. May you enjoy peace and many moments of joy during the holiday season and into the new year.
• We screened over 1000 people across BC who fall into an at- risk category for kidney disease • We built awareness and education about kidney health and kidney disease across the country through 63 episodes of our Kidney TV show PLUGGED IN which airs on SHAW TV • We provided $100,000 in emergency support to kidney patients in BC and the Yukon through our Short Term Financial Assistance Program
Pia Schindler, Executive Director The Kidney Foundation of Canada, BC & Yukon Branch
HAS THE KIDNEY FOUNDATION HELPED YOU?
A BIG THANK YOU to Natalie Quilty, graphic designer, who
Would you be willing to share your story through our media channels?
generously donated her services to The Kidney Foundation and designed
Let us know. Please contact pamela.bilusack@kidney.ca
this issue of Kidney News.
THE KIDNEY FOUNDATION OF CANADA
PRIVACY STATEMENT
The Kidney Foundation of Canada is the national volunteer organization committed to reducing the burden of kidney disease through funding and stimulating innovative research, providing education and support, promoting access to high qual contained ity healthcare, and increasing public awareness of and commitment to advancing kidney health and organ donation. Please visit our website at www.kidney.bc.ca for more information. The information in this publication is not intended to be a treatment guide. For specific information, please consult your physician.
The personal contact information that we have on file for you is used for the purpose of sending you this newsletter. If you do not wish to continue to receive this newsletter, kindly email us at info@kidney.bc.ca or phone 1-800-567-8112 to be removed from the mailing list. Please allow 30 business days for us to update our records.
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Kidney News back issues are available for viewing on The Kidney Foundation of Canada (BC & Yukon Branch) website at www.kidney.bc.ca
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