Kidney Living - Winter 2013 by The Kidney Foundation

KIDNEY

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Never too young to support a good cause

A PUBLICATION OF THE ONTARIO BRANCH

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Winter 2013 Volume 6 â&#x20AC;˘ Number 1

What’s in this issue – Winter 2013 3 5 6 8 10 11 13 14 16 17

18 19 20 22 23

A Hero with Heart Guyana Get to Know Your Kidney Healthcare Team Lion’s Camp Dorset Celebrates 35 Years World Kidney 2013 will raise awareness about Acute Kidney Injury Insurance Tips for People with Kidney Disease Dr. William Clark – Medal for Research Excellence Tax Tips Creating better quality of life through caring supportive culture Online Discussion Forums for Organ Donors and Recipients National Organ and Tissue Donation Awareness Week

Cover photo: The Dorland family enjoys some summer fun. Melissa and Bruce with their children Leah, July and Jack.

Community Highlights Mark This Date Membership Application and Renewal Form

Return Undeliverable Canadian Addresses t o: Tr i s h R e y n o l d s , C o m mu n i c a t i o n s Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:communications@kidney. on.ca. Phone:1-800-387-4474.

Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca COMMUNITY CONTACTS African-Caribbean Kidney Association 1-800-387-4474 Ext. 4140 Brampton 1.800.387.4474 ext.4120 Brant County 1.800.387.4474 ext. 4130 Central Ontario 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca Chinese Renal Association 1-800-387-4474 Ext. 4977 pchan@kidney.on.ca Eastern Ontario 401 - 1376 Bank St., Ottawa K1H 7Y3 613-724-9953/1-800-724-9953 bhill@kidney.on.ca

Editing, design and printing by GEPM Group Inc. www.gepmgroup.com

Cover Story

March Drive 2013

Canadian Publications Mail Agreement #40011479

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Accentuate the Positive

The appearance of advertising in Kidney Living does not imply an endorsement by The Kidney Foundation of Canada, not guarantee the quality, effectiveness of any products or services.

Hamilton & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 atirone@kidney.on.ca Kingston 100 Stuart St. Kingston, ON K7L 2V6 613-542-2121 alabrash@kidney.on.ca Niagara & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 atirone@kidney.on.ca North Bay 705-476-3715 northbaykidney@gmail.com Northern Superior 605 Hewitson St. Thunder Bay, ON P7B 5V5 807-624-2680 kidney@tbaytel.net Sarnia-Lambton 546 Christina St. N., Main Floor Sarnia, ON N7T 5W6 519-344-3462 ehayter@kidney.on.ca

The Kidney Foundation of Canada, Ontario Branch 2012-2013 Board of Directors Executive Terry Young, President Harvey Thomson, Past President Niloufer Bhesania, Treasurer Directors at Large Roza Berkowitz George Clark Craig Kerr June Martin Janet Morgan Ken Mylrea Brian Porter Shirley Pulkkinen Greg Robbins Mary Smith Alison Thomas Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 ©2013. Kidney Living, the contents of which is subject to copyright, is published two times 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, please contact Trish Reynolds, Editor at treynolds@kidney.on.ca or 1-800-387-4474 Ext. 4981.

www.kidney.ca/ontario Sault Ste. Marie 514 Queen St. E., 2nd Floor, Suite 1 Sault Ste. Marie, ON P6A 2A1 705-949-0400 ssmkidney@shaw.ca Southwestern Ontario NEW! (effective April 2013) 785 Wonderland Rd. S., Suite 203 London, ON N6K 1M6 519-850-5362 mbrennan@kidney.on.ca Timmins-Porcupine 11357 Hwy. 101 E. Connaught, ON P0N 1A0 705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District 1368 Ouellette Ave., Suite 310 Windsor, ON N8X 1J9 519-977-9211 kidney@mnsi.net Western Ontario (Kitchener/Waterloo) NEW! (effective April 2013) 785 Wonderland Rd. S., Suite 203 London, ON N6K 1M6 1-800-667-3597 ccoghlan@kidney.on.ca

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VOLUNTEERS

A Hero with Heart Age is just a number by Pamela Sleightholm

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Mary Schlanger and her daughter, Goldie.

ary Schlanger bakes challah every Friday to fundraise. She takes orders on Thursday and collects donations, often $20 and up, for the braided loaves. She rides the bus to a Toronto church to make sandwiches for the poor. She walked five kilometers, refusing a shorter distance, and raised over $4,000 for The Kidney Foundation. She participates every year in the Run for a Cure. And this year she went to Ottawa to receive a Queen Elizabeth II Diamond Jubilee Medal for her community work. Mary is an effervescent 93-year-old. She loves colour, has immaculate silver hair and a contagious smile, and she wears a Chai pendant—the Hebrew symbol for life—around her neck. And amazing as this woman is in 2013, hearing the story of her youth sheds light on how someone can grow old only to become young and sparkly, and remain generous and inspiring. Mary grew up in a poor Jewish family in Latvia. During the Second World War, when German soldiers were crunching into their homeland, Mary and her family packed up and fled to the Russian border. She remembers traveling by night so they wouldn’t be seen by planes, spending weeks inside a cattle train, and relying on strangers for food and shelter. “Some people don’t remember hunger,” Mary says. “But I do.” After escaping the German occupation she wound up in Siberia. She lived there four years, separated from her father and brother, but united with the man who became her husband. “When the war was over, we had no home to return to,” she remembers. So they went to Germany, living at what had been a concentration camp during the war, where she and her husband started their family. Her brother, a skilled tailor, was in the Russian military at the time. At the age of 26 Mary walked, alone and pregnant, from the American quarter of Germany to the Russian quarter to find him. Winter 2013 / Kidney Living /

VOLUNTEERS The family’s next journey began when Mary learned that Canada was recruiting tailors and helping them move across the Atlantic. Her brother took a tailoring test, securing passage for himself in 1948; other family members, including Mary, were close behind. Over the years, Mary worked tirelessly to get the other surviving family members to Canada, writing letters in code in case they were intercepted by the government. Gradually, the family settled in Ontario and rebuilt their lives here. But it took time. Mary says seven years passed before she got her citizenship, and another five years went by before her mother made it to Canada. Unfortunately, several family members passed away in Europe—some were murdered by the Nazis, others died in the years after the war. Goldie Schlanger, Mary’s youngest daughter, says her mother “came from a lot of hardship. And she says charity is the greatest thing you can ever do.” Throughout the years, Mary had cousins, a brother and a sister who went through kidney disease. She sat with them while they dialyzed, never stopping to think that she should get tested herself. When she finally did, she learned that her kidney function was also reduced. Mary goes regularly to the renal management clinic at Toronto General Hospital. “It’s not like being at the hospital,” she says. “We’re having a party!” She says Dr. Judith Miller at Toronto General has been a great friend and support. She invited Mary to join her Give the Gift of Life Walk team, Kidneys UHNite. Since learning that she has kidney disease, Mary meets regularly with her dietitian, stays active and sticks to her diet. Through her healthy lifestyle she has been able to avoid dialysis. In 2012, Mary wasn’t able to participate in her local walk because it was held on the Sabbath. But she still raised over $4,000, and walked her five kilometers another day, helping put Kidneys UHNite over their goal. Goldie says her mother is like a teenager in every aspect of her life, including fundraising—since she can’t handle money on the Sabbath, she hands out self-addressed envelopes at the synagogue. If someone commits to a pledge she follows up and watches the mail until she gets their cheque. “I don’t let them forget,” Mary says. Goldie helps keep the money in order and fields regular calls from her mom, asking to know the totals. For her community work, Mary was recognized by Chatelaine in its “Red Hot Women of the Year” feature. There’s a full-page spread with Mary in a pink dress, surrounded by women up to six decades younger. “I don’t feel right with old people,” she says. “I was old when I was young.” 

WAnted:

Walk Bloggers for our 2013 Blog Team Are you keen to share your passion for the Kidney Walks with others? Do you have a flair for writing? We’re looking for a few bloggers to join our 2013 Walk Blog team. Email communications@kidney.on.ca for details.

/ Kidney Living / Winter 2013

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WORKING TOGETHER

GUYANA

The renal unit in Guyana

Dr. Doobay doesn’t work in nephrology and doesn’t have a family connection to kidney disease, but when he heard about the number of people needing dialysis in his home country, he wanted to help. by Pamela Sleightholm

hen Dr. Budhendra Doobay, a semi-retired vascular surgeon at Niagara Health System, decided to start a dialysis clinic in his native Guyana, his peers in nephrology met his idea with disbelief. Guyana is a small South American country bordered by Venezuela, Brazil and Suriname. Public health care provides kidney patients with 13 free dialysis treatments; after that, they’re on the hook for each session, which can cost as much as $200 USD each. According to the UN, over 50 percent of the population lives on less than two dollars a day—so after their 13 treatments, many patients never return. Dr. Alistair Ingram, director of the Nephrology Division at McMaster University, is one of the nephrologists Dr. Doobay recruited to help. “My first thought was that the project was unlikely to succeed,” Dr. Ingram says. “The biggest challenge was accessing clean water for hemodialysis.” Without a reliable supply of clean water, Dr. Doobay worked with his cousin in Guyana, who is a water specialist. With the help of donors in Canada, particularly from the Vishnu Temple in Richmond Hill, they imported a large water purification machine from Florida. Along with over a dozen Canadian hemodialysis machines and a backup generator, Dr. Doobay moved the equipment into his late father’s

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home, which he donated to convert into the Doobay Renal Centre. The facility, which opened in October 2011, is staffed by Guyanese nurses and administrators. And Ontario-based nephrologists, including Dr. Ingram, Dr. Euan Carlisle and Dr. Azim Gangji, have visited to volunteer their expertise. The cost of each treatment is about $40, according to Dr. Doobay. But patients are asked only to pay what they can; no one will be turned away if they have no money. As one of three dialysis centres in the country which has a population of about 750,000, Dr. Ingram says the other clinics have been forced to lower their fees to compete with the Doobay Renal Centre. Patients travel from all over the country for treatment. Dr. Ingram estimates that there are between 600 and 800 people needing dialysis in Guyana, and they’re able to serve one in 15. The main risk factors of kidney disease are the same there as in Canada—diabetes and high blood pressure—but it’s much less likely that the disease will be diagnosed or treated in Guyana. Also, there are more young people needing dialysis, Dr. Ingram says. “We’re dialyzing teenagers in Guyana who would otherwise be dead.” But the team’s contribution goes much further than providing machines, clean water and dialysis treatments. Dr. Doobay

hopes to expand from the capital city to reach people in more remote areas in the future, and the nephrologists imagine a training program to educate Guyanese doctors in nephrology. “We want to identify promising people and train them specifically in nephrology,” Dr. Ingram says. “We can offer a stipend and have a service payback agreement so they commit to work in Guyana for some time after their training.” And this year Dr. Gangji plans to perform two or three transplants in Guyana, Dr. Doobay says. There will be no charge to the patients, who otherwise would need to pay around $40,000 CDN for the operation. The clinic has created opportunity for an incredible exchange of Canadian skills and resources to help kidney patients in Guyana. They have access to health care that they never imagined, with the possibility that their own doctors may someday be able to provide much better treatment and diagnosis.

For more information, visit: http://www.undp.org.gy/web/index. php?option=com_content&view=article&id =54&Itemid=97 http://www.vishnumandir.com/photo-gallery/ gallery.php?id=21  Winter 2013 / Kidney Living /

RENAL PROFESSIONALS

Get to Know Your Kidney Healthcare Team Part 1 of a 2-part series by Trish Reynolds

Photo credit: Photos.com

There are many variations from one renal program to another: your program may have different members, or have a different title. Over the next two issues of Kidney Living, we will highlight some of the different members of your healthcare team and provide further insight to their role as it relates to your kidney care. These descriptions may help you decide who you might talk with at your own hospital or maybe you will see that there are ways your healthcare team can help you. Throughout your journey, you will encounter nephrology nurses with expertise in a variety of areas. Nephrology nurses work closely with you, your family and other healthcare team members to help teach you about your kidney disease

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and its treatment, and support you in the lifestyle changes you may need to make. Depending on where you are in your kidney healthcare journey, you may come across a variety of nephrology nursing professionals who offer expertise with different modalities, peritoneal or hemodialysis; expertise dealing with hypertension and related issues. In Ontario, you may also come into contact with renal professionals called Independent Dialysis Coordinators and Vascular Access Coordinators. Independent Dialysis Coordinators educate patients and their families about some of the home dialysis choices. Janet Graham, (Advanced Practice Nurse, Nephrology Access, The Ottawa Hospital) has worked in the area of Vascular Access for more than 10 years. New funding through the Ontario Renal Network means that Vascular Access Coordinators are now a part of every renal program in the province. “It really is a dream come true that every program will have someone dedicated to vascular access—because it is so important to successful dialysis treatments.” Vascular access is the site on the body where blood is removed and returned during dialysis. “Ideally, the access should be surgically created months before dialysis begins to minimize complications and to avoid the use of a central venous catheter if possible,” said Graham. The dialysis machine can’t do its job if there are issues with access, which is why this area of renal care is receiving so much attention. Renal Social Workers are also an important part of your healthcare team. The social worker is available to provide adjustment counselling to you and your family. You may benefit from discussing emotional, financial, family or other concerns with your social worker as you try to understand and adjust to the changes that result from having kidney disease. The social worker can also assist you with information about community resources and financial aid programs. Debbie Hodgins is a Renal Social Worker at Hôtel Dieu Grace Hospital in

Windsor. Help from a Renal Social Worker can be for the patient themselves or even family members. “Sometimes the patient is coping okay with the diagnosis, but the caregiver is not—we can provide help and support to family members as well,” said Hodgins. While accessing community resources including transportation, drug coverage and even income supports are frequent requests, social workers also spend a great deal of time advocating on the behalf of patients. “When issues are brought forward we can do work to bring the needs forward to The Kidney Foundation, the Local Health Integration Network (LHINs) and government,” added Hodgins. “Often one question can help start the ball rolling—and if one person is facing a particular issue, it is likely that others are facing similar challenges too.” People are often intimidated and don’t ask for help—especially when it might be as personal as seeking assistance for your own mental health. Reaching out to ask, while often difficult, is the first step to feeling better. The Kidney Foundation has posted some frequently-asked questions on our website—www.kidney.ca/ youcanask—that your social worker may

Photo credit: MediaBakery/0000514

our kidney healthcare team has years of experience treating people with kidney disease. If you have a question or need assistance of any kind, ask a member of your healthcare team. If they can’t help you, they will refer you to someone who can. Asking for help is not a sign of weakness, but of your desire to do well.

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RENAL PROFESSIONALS

Photo credit: Photos.com

1-866-788-2277 • kidney.ca/ontario

be able to assist with. Did you know that you might be able to access a psychologist for assistance? A psychologist is a professional who is trained to provide counselling on psychological and emotional issues. (See related story on page 16.) You may also come across physiotherapists in your renal program. A physiotherapist can provide instruction regarding exercises to help you stay active and strong. How well do you know your renal dietitian? The dietitian will recommend suitable food choices to help make you feel better. Working together with you, your family and your doctor, the dietitian can suggest a daily eating plan to meet your nutritional needs and help manage your kidney disease. Although the dietitian needs to discuss the restrictions to your diet with you, the dietitian is also the best person to tell you how to safely eat the things that you really want to eat. The dietitian can advise you how to replace some foods with others that are much better for you, and how to enjoy a wide variety of foods. Dietary questions top the list when it comes to information and referral questions at The Kidney Foundation. While we have some great resources in place to help you with your diet, including our blog by renal dietitian June Martin and The Kidney Community Kitchen www.kidneycommunitykitchen.ca; your renal dietitian is the best person to answer your individual questions. There is no one renal diet to follow, so their expertise can help guide your food decisions and ensure that you are making healthy choices. Your family doctor is also an important member of your healthcare team. It is important that you continue to see your family doctor. Your kidney healthcare team will take excellent care of any problem associated with your kidney disease. However, your family doctor is best suited to provide preventative healthcare check-ups, such as pap smears and prostate exams, and to look after any other healthcare needs. In the next issue of Kidney Living we will highlight your nephrologist, transplant surgeon, transplant coordinator and more. 

Stay Connected Did you know you can now receive Kidney Living by email? You’ll receive the same great content as the print version and you’ll get it a few days earlier. Receiving this newsletter electronically also assures the Foundation can keep costs low by decreasing printing and postage expenses. To change your subscription to an email version, simply send your name, current mailing address, telephone number and email address to grose@kidney. on.ca. Please put “Change Kidney Living Subscription” in the subject line.

With information from the Living with Kidney Disease Manual www.kidney.ca/ontario

Winter 2013 / Kidney Living /

LIVING WELL

Lions Camp Dorset Celebrates 35 Years A holiday that includes something that all-inclusives don’t by Trish Reynolds

ions Camp Dorset has a long tradition in making summer dreams come true. Lions and Lioness Clubs from across Ontario continue to donate their time and support to ensure that kidney patients and their families have access to a summer holiday.

changes like installing shower stalls instead of bathtubs, as well as building cottages at ground level to minimize the use of stairs are just a few of the ways the camp tries to be user friendly. But Camp Dorset is more than just a collection of summer cottages; it’s the

2013 marks the 35th anniversary of Camp Dorset. Starting from just three cottages on Deer Lake, Camp Dorset has grown to a summer resort with 14 guest cabins, 15 efficiency units, room for summer camping trailers, recreation centre, indoor heated swimming pool and don’t forget the state-of-the-art dialysis centre. The camp has stayed true to its humble grassroots, but guests can expect nothing short of a family-friendly summer holiday with the ease of dialysis just steps away. The investment in Camp Dorset and continuous maintenance keeps droves of Lions volunteers busy. To ensure that the Camp remains up to date, each year one of the cottages is given a major renovation. The cottages are rebuilt with a goal of making them more accessible. Simple

chance for families to gather when they would otherwise not have been able to, it’s a chance for families to see that they aren’t facing kidney disease alone; it’s about making lasting friendships with

Murray Sutherland

this vacation is their first. The chance to dialyze in the morning and then canoe in the afternoon helps ease the stress of living with a chronic illness,” said Walker. “We’ve had families meet at Dorset for family reunions, because otherwise the opportunity to gather just wouldn’t exist,” she added. Recreational staff is on hand to plan activities for the whole family. From the traditional Monday potluck dinner to the Wednesday night Bingo, guests have the opportunity to participate in numerous organized activities. Dialysis treatments are scheduled in the morning to allow patients to make the most of their summer vacation, leaving ample time to make plenty of holiday memories. “The Kidney Foundation has been a strong supporter of Camp Dorset for over 30 years,” said Walker. The Kidney Foundation contributes $200 for every dialysis patient attending camp. Fees for the camp have been kept as low as possible—$400 for a three bedroom cottage and $200 for an efficiency unit. “Without The Kidney Foundation’s support we wouldn’t be able to offer these rates,” added Walker. Camp Dorset is planning a special Appreciation Day on June 15, 2013 from 11:00am – 4:00pm. RSVP to 705-766-2220 or email to lionscampdorset@vianet.ca. Looking for an easy way to support Lion’s Camp Dorset? If you have Canadian Tire money sitting in your glove compartment or drawer, consider sending it to Lion’s Camp Dorset. Mail to: Lion’s Camp Dorset c/o Steve Woolman P.O. Box#306 1087 Camp Dorset Road Dorset, ON P0A 1E0 

those who understand what it’s like to live with kidney disease. Helen Walker, Administrative Coordinator at the Camp, gets to see first hand what the Camp means to patients. “For many families

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FUNDRAISING

July Dorland “I was really nervous and my heart was beating really fast.” by Pamela Sleightholm

ine-year-old July Dorland remembers the day she called The Kidney Foundation to learn about fundraising. Today, July is a healthy, vibrant, energetic girl. But she was born prematurely, spent her first six weeks in NICU, had elevated creatinine and started a range of medication when she turned one. Nephrologists introduced her parents to the worst-case scenario—July’s kidneys were failing and she would eventually need a transplant. July’s doctors and her parents, Melissa Grossman and Bruce Dorland, decided that a pre-emptive transplant would be best for July if a match could be found. Incredibly, six family members were tested and four were matches. In December 2009, July received a kidney from her dad. She was six years old. Melissa tried to keep news of the surgery within the family and close friends— but July had other ideas. During a lesson on the body in Grade 1, she stood up in front of her class and told her teacher and peers about her transplant. “I wasn’t ready to talk about it,” Melissa says, “but my six-year-old was.” That was the beginning. At the end of 2012, when her teacher introduced her class to Project Give Back—an assignment that gets elementary kids to organize a “FUNraiser” for a charity—July decided to turn her abundant energy to The Kidney Foundation. When she called the Ontario Branch, she learned about Kidney Pages—webpages where you can fundraise in honour of a loved one, your birthday, wedding, or in July’s case, a Transplantiversary. www.kidney.ca/ontario

July shows her display board for her class presentation With a little help from her mom, July set up her Transplantiversary page with an ambitious fundraising goal of $5,000. Within just a few months, she had more than doubled her goal and has raised more than $13,000 for The Kidney Foundation of Canada. She says “it felt really nice” to see supportive comments on her page from friends, family and teachers while the donations added up. But she decided to go even further and take her fundraising to the street. After her transplant, July, a fervent animal lover, wasn’t able to play with dogs. A family friend, who’s an artist, heard of July’s yen and started drawing a dog for her every day. When it came time to fundraise, July chose her favourite drawings and brought them together on one poster. With copies of the poster in hand, she canvasses her neighbourhood, knocking on doors, sharing her story and selling copies for $10. “She goes with a friend and makes me stand on the sidewalk,” Melissa says. “I couldn’t talk about it without crying. But July, like all kids, has this honest, real, uncomplicated way of talking about it without shame.” Passionate people like July get conversations started about organ donation and kidney disease. We are so grateful for the impact they have on the work of The Kidney Foundation and the lives of kidney patients in Canada. Interested in learning how you can set up a personal fundraising page? Visit www.kidney.ca/kidneypages. 

July and Bruce

Winter 2013 / Kidney Living /

AWARENESS

Kidneys for Life: Stop Acute Kidney Injury www.worldkidneyday.org

World Kidney Day 2013 will raise awareness about Acute Kidney Injury

arch 14, 2013 will mark the eighth World Kidney Day, a day of global action jointly organized by the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). Each year, World Kidney Day strives to raise awareness about kidneys and their importance to overall health. In recent years, activities have highlighted high blood pressure, diabetes and transplantation. This year, the nephrology community has been joined by other medical colleagues in recognizing the urgent need to increase awareness about Acute Kidney Injury (AKI) among physicians and hospital staff, but also the need for a public awareness campaign which could demystify this dangerous condition and make “kidney attack” recognizable to the public in a similar way that heart-attack or stroke campaigns have done. Currently AKI is inadequately addressed in clinical education and training, and largely neglected in public awareness and research programs. The consequences are missed opportunities to reduce risk, delayed diagnosis, poor management and increased length of hospital stays, which all contribute to spiraling healthcare costs. In the developed world AKI is often seen in hospital settings: US data suggests that an estimated five to 20 percent of critically ill patients (patients in the intensive care unit) experience an episode of AKI during the course of their illness, and development of AKI has a major negative impact on outcomes of any illness. To this end, greater awareness of AKI within the general physician and healthcare profession is needed. There are also important opportunities for prevention, especially by careful attention to prescription medicines management in elderly people. By focusing on AKI, the ISN and the IFKF together as the World Kidney Day Steering Committee hope to raise awareness of AKI and stimulate discussion, education and policy development leading to improved prevention and treatment of this major kidney disease around the globe. 

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Go the extra mile. Donate your Aeroplan Miles to The Kidney Foundation Looking for an easy way to make a difference without opening your pocketbook? Now you can donate your Aeroplan Miles to The Kidney Foundation of Canada with a few clicks of your mouse. 1. Visit aeroplan.com, and select Donate your Miles option under Use Your Miles. 2. Click on Participating Charities (left menu) and search “Kidney.” 3. Click on the Kidney Foundation icon to view The Kidney Foundation’s donation page and then click on the orange Donate button to make your donation. You will need to sign into your account to complete the transaction. Donate as many or as few miles as you like, knowing that every mile will help us help those with kidney disease.

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ADVOCACY

Insurance Tips for People with Kidney Disease www.kidney.ca

Many people think that they cannot get life insurance (or other types of personal insurance such as health, travel or disability) if they have kidney disease. While it can be difficult, it is possible in many situations. This information offers some tips that may help you to access personal insurance when living with kidney disease. The information provided below is general in nature and does not necessarily cover all circumstances. Please note that following these tips does not guarantee that you will be insured. We recommend that you seek professional advice for your individual questions.

General Insurance Information

• Understand the exclusions and limitations of your insurance or insurance policy, especially when you have a preexisting condition. • Be honest on your insurance application and disclose any known health issues. If you do not, you may invalidate the contract and a claim may not be paid. • Insurance can sometimes be easier to access the longer you have been on dialysis or living with a kidney transplant (and your disease is considered “stable” and well managed). • Check with your employer about your group insurance plans and coverage. Group benefits are often easier to qualify for and may be issued (up to a certain amount) without the need to provide medical information. • Shop around. Look for an insurance agent or broker who is familiar with kidney disease and/or other chronic conditions. Some questions you may want to ask a potential insurance agent or broker include: • Do you have experience helping people with kidney disease or other chronic illnesses? • Do you have access to several insurers/companies? (If an application is declined or costs more than the standard rate from one insurer, you can more easily check with another). www.kidney.ca/ontario

Photo credit: BigStockPhoto.com/6961380

Travel Insurance

• Make sure you understand the exclusions and limitations of any policy. For example, some policies will not provide coverage if you have changed medications, stopped taking a medication (even if it is because your condition has improved) or changed your medication dosage (raised or lowered) within 30 days of traveling. • If you are relying on travel insurance provided through your credit card, make sure you understand all of the exclusions, limitations and clauses for preexisting conditions so that you know how much you are truly covered for and how the insurance company will handle any pre-existing conditions if you need to make a claim. • Look for insurance that covers the person (which is assessed at the time you apply for coverage) rather than the trip (which is assessed at the time you make a claim). • Most travel insurance policies will limit the number of days of travel coverage that you have. Make sure that your trip does not last longer than your insurance coverage.

Disability or Income Replacement Insurance • Disability or income replacement insurance may be available under an employ-

ers’ group insurance plan, however it is unlikely to be portable if you change employers. • Disability or income replacement insurance may be available to people with kidney disease at an increased cost or with an exclusion for any disabilities relating to pre-existing conditions. • You may want to explore Long Term Care insurance (another form of disability insurance, which is now becoming available).

Life Insurance

• If you belong to a workplace life insurance plan, you may be able to take your group life insurance with you, even if you switch employers. • Do not apply and then wait and see if you are declined—it will go on record. A better option is to have your insurance agent or broker explore coverage options before formally applying. They can do this by providing all of your information (without your name) to an insurer so that you can get a preliminary decision on whether they would provide coverage, how much it would cost, etc. • You may want to explore Partner Insurance as an option: a couple shares an insurance plan (even if one has kidney disease) and the benefit is paid to the beneficiaries/estate when both partners have passed away.  Winter 2013 / Kidney Living /

PERSONAL STORY

Accentuate the Positive Photo credit: Shannon Vine Photography

You never know what tomorrow may bring

Vanessa with her fiancé, Ryan Grisdale

“Happiness is a choice.”

Save the Date

September 2013 Kidney Walks

will be coming to a community near you this September Online registration will be available soon. For a list of 2013 Walk Communities visit www.kidneywalk.ca 12

/ Kidney Living / Winter 2013

by Trish Reynolds

anessa Cowan is a fun and ambitious young lady. She likes to spend time outdoors and enjoy time with her family. At first glance she appears no different from her peers, but at age 27, Vanessa exudes a maturity that is well beyond her years. Ten years ago, Vanessa went to her doctor complaining of fatigue and lack of energy. What was first thought to be mononucleosis, was later diagnosed as kidney failure. The last 10 years could be described as a roller coaster ride; including peritoneal dialysis, a failed double kidney transplant, hemodialysis and thousands of medical appointments in between. Where some might feel sorrow and regret for what could have been, Vanessa radiates a certain confidence, noting that the experience has made her who she is today. “I have learned to just take things day by day and to live in the moment because you never know what tomorrow may bring.” Living life as “normal” as possible is a priority. “Staying positive is natural for me, because I know what really matters—my family, my friends and my fiancé, they are important to me and have always been there for me,” said Vanessa. There were times when a simple walk or cooking a meal weren’t possible, so as Vanessa began to feel better, she learned to appreciate the simple things in life and not take them for granted. Staying positive is key along with staying informed and being an active participant in her care. Learning as much about kidney disease, the side-effects of medications and the renal diet are just a few of the ways she takes an active role in the management of her disease. “Keeping a close relationship with the medical professionals I deal with on a regular basis has been important and helps me make informed decisions about my health care” added Vanessa. Trips to dialysis, three times a week, for five hours from start to finish per treatment can really put a dent in a girl’s social life. “I don’t look at dialysis as a burden that interrupts my schedule; I look at it as a necessity that is keeping me alive and allowing me to enjoy life. Still it can be difficult knowing I can’t always make it to a special event.” There is one special event that holds an important place in Vanessa’s heart. The Kidney Foundation’s annual Give the Gift of Life Walk. “Being at the walk itself is great, I love experiencing everyone’s enthusiasm and meeting other families affected by kidney disease.” Each year, Vanessa and her team of family and friends recruit more and more members to raise funds to support The Kidney Foundation and raise awareness about kidney failure and organ donation. Eventually Team Vanessa became Team Second Chance, a name that Vanessa finds very fitting since she truly believe every person deserves a second chance to live a healthy life away from a dialysis machine. “Happiness is a choice. While things such as kidney failure may happen to us throughout our lifetimes, it is our choice as to how we handle those situations. I choose happiness and because of that reason I am who I am today.”  www.kidney.ca/ontario

Photo credit: Cate Abbott

MEDICAL RESEARCH

Dr. Clark (centre) with his colleagues and fellow Medal for Research Excellence winners Dr. Lindsay (left) (2006) and Dr. Jevnikar (2005)

Dr. William Clark – Medal for Research Excellence by Pamela Sleightholm

“W

hen I started in nephrology I wanted to provide some way to make life better for those with kidney disease,” says Dr. William Clark, a clinician-scientist, lead investigator in the Walkerton Health Study, and the 2012 recipient of The Kidney Foundation of Canada’s Medal for Research Excellence. Thirty-five years ago, a diagnosis of thrombotic thrombocytopenic purpura (TTP) meant a patient would be dead within two weeks. TTP is a rare disorder that strikes people mainly between the ages of 15 and 40, where platelets—the cells responsible for blood clotting— actually damage k idneys and other organs. Today if a patient is diagnosed with TTP they’re put on therapeutic plasma exchange—a procedure Dr. Clark first tried in 1977—which saves the lives of over 90 percent of the people who receive it. His experience with this novel treatment strengthened Dr. Clark’s interest in the treatment and prevention of kidney disease.

www.kidney.ca/ontario

Dr. Clark’s expertise in platelet-related kidney disease—which is based on his research on cells, animals and humans— was called upon when Walkerton’s water supply was contaminated with E. coli O157:H7 in 2000. The toxin produced by this virulent strain of E. coli can cause another platelet-mediated kidney disorder, hemolytic uremic syndrome (HUS). Dr. Clark led an able team of investigators in an extensive screening and monitoring program to prevent further damage to an already concerned population. Until 2009, he and his team tested and treated patients, collected data, held community information sessions and liaised with the media. “Now, Walkerton has a lower incidence of untreated kidney disease than other populations,” he says. “We were able to pick out the injured people at risk of further damage and get them treatment, and we identified people with potential risk and educated them on the need for screening to prevent long-term negative outcomes. The general screening also identified kidney disease from causes unrelated to the outbreak and

those people were able to get the care they needed too.” Their work in Walkerton also led to about 30 different projects related to the outbreak, which inspired studies in other areas linked to kidney health and water. Right now, Dr. Clark is investigating how the amount of water people drink—in some cases not enough, in others, too much—affects the progression of kidney disease. Juggling time between his research, clinical practice and teaching at Western University, Dr. Clark says it’s important to commit time to learning and further developing his own skills. Early in his career, he made a deal with two other renowned nephrologists—Drs. Linton and Lindsay—who agreed to cover each other every seven years so they can get away for six months of intensive studies. “These sabbaticals allow the time to think anew and learn how to change your techniques along the way to get better answers for patients with kidney disease.” 

Winter 2013 / Kidney Living /

ADVOCACY

Tax Tips

The information provided below is general in nature and does not necessarily cover all circumstances. While we make every effort to be accurate, we recommend that you seek professional tax advice for your individual questions. The Canada Revenue Agency (CRA) also provides detailed instructions for claiming the various tax credits and deductions that are available. These can be obtained from the CRA web site www.cra-arc. gc.ca/ or your local tax services office, or by calling 1-800-959-8281.

Medical Expense Tax Credit The Medical Expense Tax Credit is a nonrefundable tax credit that can be claimed for a wide range of medical and related expenses such as health care services, travel expenses, home renovations to install a hemodialysis machine, drugs, dental services, and health insurance. Out of country expenses over and above provincial coverage may also be included. You can claim expenses for yourself, for your spouse, and with some limitations, for your other dependents. With some exceptions (see transportation) you must have receipts for all your expenses. You may also qualify for a refundable medical expense supplement for working individuals claiming high medical expenses. A full list of eligible expenses is available at: www.cra-arc.gc.ca/tx/ndvdls/tpcs/ ncm-tx/rtrn/cmpltng/ddctns/lns300350/330/llwbl-eng.html

Transportation and Meals Travel costs to and from medical treatment may be included as medical expenses for individuals who need to travel more than 40 km each way. People who travel more than 80 km each way may also be able to claim expenses for food and accommodations.

/ Kidney Living / Winter 2013

Photo credit: Photos.com

Every year during tax season, The Kidney Foundation prepares general tax tips for dialysis and transplant patients. The income tax assistance measures most often used by kidney patients are the Medical Expense Tax Credit and the Disability Tax Credit.

If you require the assistance of an attendant when traveling (the need must be certified by a medical practitioner), the travel costs of the accompanying individual can also be claimed. The cost of travelling by ambulance to or from a hospital is also an eligible medical expense. Receipts are required to claim for all travel expenses, other than vehicle and meal expenses. We recommend that you keep accurate records of your mileage and receipts for your expenses, and get a letter from your doctor or dialysis unit in case you need to provide proof of the number of trips you made. A sample letter is provided on our website at www.kidney.ca/taxtips. In Ontario, those eligible can claim 55 cents/kilometer.

Kidney dialysis machine and home dialysis People who have installed a home hemodialysis machine can deduct the following costs: • Repairs, maintenance and supplies of the machine; • Water and electricity to operate the machine; • The cost of housing the machine (ie. municipal taxes, insurance, heating lighting, and maintenance and repairs, but not including capital cost allowance or mortgage interest) or the portion of rent that is attributable to the room where the machine is kept. If you use a room in your home to store dialysis supplies or as a quiet and sanitary place to do dialysis, you may qualify to claim a portion of your housing costs. For example, if you live in a six-room house, and you use one room as a dialysis room, you may be able to deduct one sixth of the

rent, heating and electricity costs. In addition, other deductions you may claim include: • Additions, renovations, or alterations to a home • A telephone extension in the dialysis room • All calls to a hospital for advice or to arrange for repairs, and necessary and unavoidable costs to transport supplies. The hospital official who approved installation must provide written documentation stating that the additions, renovations or alterations were necessary.

Organ Transplants People may claim reasonable amounts paid to locate a compatible donor, to arrange the transplant including legal fees and insurance premiums, and reasonable travelling costs including board and lodging for the patient, the donor, and their respective attendants. If the donor paid his/her own expenses, and was not reimbursed, the donor may be able to claim them on his/her own income tax return.

Refundable Medical Expense Supplement A refundable credit of $1,119.00 may be claimed by eligible working people with low incomes and high medical expenses. For more information see the General Income Tax and Benefit Guide available from CR A: www.cra-arc.gc.ca/formspubs/t1gnrl/menu-eng.html

Drugs and Health Products Health Canada provides access to nonmarketed drugs and medical devices www.kidney.ca/ontario

ADVOCACY

Helpful Resource:

Kidney Foundation tax tips – www. kidney.ca/taxtips for further information, sample letters and quick links to information in the CRA guidelines, or call 1-800-387-4474 ext.4971.

Photo credit: 16431479

The Community Volunteer Income Tax Program

1-800-959-8281, or visit www.cra-arc. gc.ca/tx/ndvdls/vlntr/clncs/menueng.html that have not yet been approved for sale in Canada through its Special Access Programme (SAP) to doctors who are treating patients with serious or lifethreatening conditions where conventional therapies have failed, are unavailable or unsuitable. Further information is available at: www.hc-sc.gc.ca/dhp-mps/ index-eng.php

Disability Tax Credit The Disability Tax Credit is a nonrefundable tax credit that reduces the amount of income tax that may be owed by people with disabilities or the people who support them. The credit will reduce your income tax payable if you qualify. If you have no tax payable, you may transfer the credit to a spouse or other supporting person. We recommend that all dialysis patients apply for the Disability Tax Credit. The federal disability amount for 2012 is $7,546.00 provided that it is certified by a qualified practitioner. Individuals under the age of 18 years may also qualify for a supplement. The amount may vary by province or territory. If you receive a transplant you will no longer be eligible for the credit, unless you qualify under a different type of disability (e.g. blindness). You may be able to claim the credit for the portion of that tax year that you were still on dialysis. For example, if you received a transplant on May 1, 2012 you may apply for the credit from January to April 2012. Important Note: The Disability Tax Credit Certificate (T2201) must be completed by a qualified practitioner (Medical Doctor, Physiotherapist etc.). In Part B under Life Sustaining Therapy, we suggest www.kidney.ca/ontario

your doctor answer yes to the question: “Does your patient meet the conditions for life-sustaining therapy?” and specify the “type of therapy” as kidney dialysis to filter blood. The letter, “Addendum to the Disability Tax Credit Certificate” may also be helpful in explaining the diagnosis of End Stage Renal Disease and the time required for dialysis. Visit our website for the full tax tips information package with information about the Disability Supports Deduction, Family Caregiver Amount (NEW), Federal Excise Gasoline Tax Refund Program, Working Income Tax Benefit (WITB) and Registered Disability Savings Plan (RDSP). 

Information for People with Disabilities

The booklet, Medical and DisabilityRelated Information – 2012 (Guide RC 4064 (E) Rev.12), contains detailed information on the Disability Tax Credit and Medical Expenses Credit and other deductions for which you may be eligible. The booklet is available from your local tax services office or on the internet at www.cra-arc.gc.ca/ disabilityor in alternate formats at www.cra-arc.gc.ca/alternate or by calling 1-800-959-2221.

Tax Tipsfor Dialysis Patients The tax tip information package is available online at kidney.ca/taxtips or through your Renal Program. The package includes information about the Disability Tax Credit, eligible medical expenses, home dialysis expenses and more. While we make every effort to be accurate, we recommend you seek professional tax advice for your individual questions.

Winter 2013 / Kidney Living /

KIDNEY HEALTH MONTH

Creating better quality of life through caring supportive culture Psychonephrology may sound like a complex medical term, but it’s a big word with a lot of heart behind it. By: Wendy Kudeba

“There is a high level of illness intrusiveness with kidney disease,” said Dr. Hercz.

/ Kidney Living / Winter 2013

rs Marta Novak and Gavril Hercz are dedicating a significant amount of their clinical work and research efforts to the field, which is quickly gaining more attention within the nephrology community. Psychonephrology addresses the specific emotional, psychological and social impacts of chronic kidney disease on an individual, his or her family and the staff caring for them. “What can we do to increase a caring, supportive culture in our medical care, to promote better quality of life?” Dr. Novak asks. Whether patients choose an in-centre treatment modality, such as hemodialysis, or a home-based treatment such as home nocturnal dialysis or peritoneal dialysis, each treatment option has a high level of intrusiveness into the daily lives of patients and their families, which results in an impaired quality of life. “The world changes its colour,” said Dr. Hercz, for those diagnosed with kidney disease, struggling and trying to cope with new health challenges. “Our experiences of the world around us are significantly shaped by our sense of vulnerability when we become ill.” Patients quickly become very familiar with the blood test numbers and levels that monitor their progress and health, but Dr. Novak wants all healthcare providers to assist patients in looking beyond the numbers to identify and assist them in tackling the many complex emotions, concerns, changing relationships, and fears they may have in living with kidney disease. “There is a high level of illness intrusiveness with kidney disease,” said Dr. Hercz. Dr. Novak notes there are many elements which impact patients’ wellbeing and emotional health. Depression and anxiety are common among CKD patients, who must cope with overlapping symptoms of kidney disease such as fatigue, disrupted sleep patterns and appetite challenges. Long term, these factors can often have a negative impact on the potential for positive treatment results. “We neglect how demanding treatment is; it’s not just that it’s your ‘new normal’, it’s endless,” said Dr. Novak. “We’d like to train front line workers to provide practical solutions to patients and train patients to ask for help. We need to approach this in partnership with nephrology and not just psychology so that it will get more attention and become integrated into mainstream care for kidney patients.” In future editions of Kidney Living and through our website, we’ll provide more insight into the world of psychonephrology and provide tips on how to address changing family relationships, emotional and behavioural problems and technical/ environmental issues.  www.kidney.ca/ontario

ORGAN DONATION

Online Discussion Forums for Organ Donors and Recipients

he Kidney Foundation of Canada expanded its online presence with the launch of two new discussion forums on organ donation, For Donors Only (ForDonorsOnly.com) and For Recipients Only (ForRecipientsOnly.com) made possible through the collaboration of entrepreneur Lawrence I. Geller. For people living with kidney failure, a kidney transplant often represents a gift of life, providing a significant improvement to their health and quality of life. Online discussion forums can help organ donors and recipients throughout the organ transplantation process by providing a private and unrestricted venue to exchange information on concerns and challenges experienced both before and after an organ transplant or donation. “There is a real, expressed need to provide greater opportunities for individuals to exchange support and information relating to organ donation and transplantation. Online discussion forums help address the need, allowing people to communicate with one another, regardless of time or distance,” said Paul Shay, National Executive Director of The Kidney Foundation of Canada. ForDonorsOnly.com and ForRecipientsOnly.com were made possible through a unique and innovative alliance with an entrepreneur and kidney transplant recipient, Mr. Lawrence Geller. “The Kidney Foundation and I share a common interest in promoting organ donation and in making sure that community needs are met, so I am very pleased to help lead the development of these discussion forums,” said Mr. Geller. The Kidney Foundation of Canada and Mr. Geller will collaboratively manage both online discussion forums. This initiative is the first phase in the development of a branded, private social network that will complement The Kidney Foundation’s KIDNEY CONNECT Peer Support program, a help line which matches people living with kidney disease with volunteers willing to share their own experiences. 

Comfortable Dialysis, Chemotherapy & Infusion Clothing

Warm and comfortable clothing that can be worn to, during and after treatment with easy access to your infusion ports. Available in various styles and various colours and sizes, EZ Access Treatment Wear provides discreet zippers for access to arm and chest ports. Visit our website for online ordering.

www.ezaccesswear.ca 1-855-385-1005 www.kidney.ca/ontario

Winter 2013 / Kidney Living /

ORGAN DONATION

National Organ and Tissue Donation Awareness Week

Photo credit: BigStockPhoto.com/1878066

April 21-27

Ways to register: • Online registration at www.beadonor.ca • Download a form at beadonor.ca and mail it to Organ Donor Consent Service Ontario PO Box 48 Kingston, ONK7L 5J3 • Visit a Service Ontario centre in your community

/ Kidney Living / Winter 2013

ore than 1,500 Ontarians are on wait lists for life-saving organ transplants and thousands more need tissue transplants to live their lives to the fullest. They are living with the hope that their transplants will take place because somewhere in the province a person has chosen to save a life by giving his or her consent to organ and tissue donation. On January 31, Trillium Gift of Life Network announced that a record-breaking 1,053 lifesaving organ transplants were performed in Ontario in 2012, an increase of 11 percent over the previous year and the third year in a row the province has reported growth in the number of transplants performed. Despite the increase in donors, lives are still being lost because only 22 percent of Ontarians have registered their consent to organ and tissue donation. In 2012, 95 people on the transplant wait list died. In the absence of registered consent, 196 families declined to donate their loved ones’ organs. Had their family member been registered, an estimated 370 additional lifesaving transplants could have been performed. According to the Gift of 8 Movement on www.BeADonor.ca, 185,430 people have registered consent to organ and tissue donation since April 1, 2012. Rates available by community show that the GTA continues to lag behind the rest of the province. Northern Ontario communities continue to lead donor registration rates in Ontario. Two suburbs of Sudbury, Hanmer and Garson, now report 50 percent of their population as registered organ and tissue donors.

What can you do to help? Generally, the people who read this publication already have some knowledge about organ donation. Many are awaiting a kidney, some are living donors, others are on dialysis, and many of you are caregivers, who know first-hand the impact of kidney failure and work hard to spread the word about organ donation. With all of the knowledge you have, there are still a few things you can do to help. • Show your gratitude by sharing the impact of what an organ transplant means. Share it at your place of worship or local service organization. Your story can inspire others to take action. • Organize a workplace Gift of 8 Campaign using the online tool at www.beadonor.ca. • Have a family discussion about organ donation. Encourage at least five of your friends to do the same. Discuss your wishes, find out the answers to any of your questions, then double check that you are registered by visiting www.beadonor. ca. Two minutes of your time, that’s all it takes. 

www.kidney.ca/ontario

KIDNEY HEALTH MONTH

arch Drive, held during Kidney Health Month from March 1-31, is The Kidney Foundation’s only door-to-door campaign and our largest fundraiser. In Ontario, the Foundation proudly calls to action a volunteer force of 14,000 people in 250 communities large and small. The result of their efforts is $950,000 raised to support research initiatives, patient programs, information and referral materials and public awareness campaigns. Volunteers like Dewi Jones, are the key to the success of the campaign. Dewi canvasses his Lakefield, Ontario community each March in support of The Kidney Foundation. In fact, he is the only canvasser in his community. If there is such a thing as a March Drive superstar – Dewi would be it. He has single-handedly raised over $8,000 in the last three years. Donations from the door-to-door canvass have risen in his community over the last three years, and he is anxious to see if the trend will continue in 2013. Dewi is no stranger to kidney disease. Dewi’s wife of 50 years was advised in December 2007 that her kidneys were failing as a result of her diabetes and she would need dialysis to survive. “Having witnessed not only my late wife’s struggle, but the struggle of so many other dialysis patients inspired me to help,” said Dewi. After responding to a request in a local paper seeking canvassers for The Kidney Foundation’ s March Drive, Dewi began canvassing door to door in hopes of making a difference. “I felt it was something I could do, to contribute towards the future possibility of a cure for kidney disease,” he commented. March Drive canvassers like Dewi Jones know first-hand the challenges of kidney disease. Inspired to make a difference – at 80 years – Dewi is an inspiration for his tremendous support. Take action today and join our volunteer team by pledging to canvass your neighbourhood. If traditional canvassing isn’t possible, perhaps you would consider canvassing your online community? Visit www.marchdrive.ca to set up your personal e-canvassing campaign or make a donation in honour of Kidney Health Month by clicking the donate button. 

Your Story is Worth Sharing How has kidney disease impacted your life? Share your inspiring story and we may feature it on our website or in Kidney Living.

Email us your story in 300 words or less and include a high resolution photo!

communications@kidney.on.ca

www.kidneycommunitykitchen.ca www.kidney.ca/ontario

We are eager to read about you!

Winter 2013 / Kidney Living /

COMMUNITY HIGHLIGHTS

Community Highlights

Impressions 2012 Honours Dr. David Russell u The Kidney Foundation paid tribute Dr. David Russell in recognition of his contributions to medicine, administration and academia and the significant impact he has had on medical care provided to the Hamilton community. With a strong focus on patient care, Dr. Russellâ&#x20AC;&#x2122;s patients are quick to sing his praises, recalling a doctor who has made an impact on their lives. As a mentor and teacher, Dr. Russell has been described by his colleagues as an innovator with a keen desire to bring the best transplant care to his patients. Impressions 2012 featured personal tributes and stories, laughter and praise for a man who is so respected.

Dr. Azim Gangji, Dr David Russell and Dr. Euan Carlisle at Impressions

New Kidney Foundation Chapter to Provide Outreach to the African Caribbean Community Chapter status has been given to a new Chapter of The Kidney Foundation. Welcome to the members of the African Caribbean Kidney Association (ACKA). The Chapter is currently working on a Work Plan, and hopes to launch the new Chapter publicly in March. The African Caribbean Kidney Association will aim to reduce the burden of kidney disease in individuals of African and Caribbean origin. The official launch will take place on March 21 at the Scarborough Civic Centre.

Tyler Cassleman from Kiwanis with Krista Dewsbury and Murray Sutherland, Kidney Foundation Board members

Seaway Kiwanis supports Grade School Education Program p The Seaway Kiwanis supported the Sidney the Kidney grade school education program in 2012 in Sarnia. Special thanks to volunteer Mavis Bolton for her hard work and dedication arranging the delivery of the program in the Sarnia community. The Kiwanis presented The Kidney Foundation with an additional $1,000 to assist with the program in 2013. This will allow us to purchase promotional items that can be used to reinforce our kidney health and organ donation messages.

/ Kidney Living / Winter 2013

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

Chevaliers de Colomb, Hawkesbury Walk cheque presentation.

Dishing out breakfast in support of The Kidney Foundation Keynote speaker Marie-Eve Chainey is joined by speaker Nadine Valk, Director of Programs and Public Policy at The Kidney Foundation of Canada

Kidney Kaleidoscope Symposium Informs and Educates p The Kidney Foundation of Canada held a patient symposium, “Kidney Kaleidoscope” on October 21, 2012 at the Donald Gordon Conference Centre in Kingston. The aim of the event was to provide patients and their families with information on various topics relating to kidney disease. Approximately 75 attendees enjoyed a variety of topics and a fabulous lunch provided by the centre. The keynote speaker was Marie-Eve Chainey, and other presentations included the Kidney Community Kitchen, Independent Dialysis, Dialysis at Sea, Diabetes and Renal Care, Renal Rehabilitation, and Transplantation. The day closed with a presentation by Naomi Blundell and Linda Shrout—Care Clowns—who got everyone smiling with their presentation “Laugh Lots—Stress Less, Seriously Fun Stuff.” Our thanks to Fresenius Medical Care Canada for sponsoring this event as well as gold sponsors Sanofi-Aventis, Janssen Ortho, Boehringer Ingelheim, and silver sponsors Astellas Pharma and Disability Tax Credit Service.

p Bruce Hill, Suzanne Laniel and Sarah Hart, employees with The Kidney Foundation’s Eastern Ontario Chapter, partnered with the Knights of Columbus (Chevaliers de Colomb) of Hawkesbury in a January 20 fundraiser. This Sunday morning event saw 280 people pay $5 for a hearty breakfast at the local Catholic church. Foundation employees served food and drinks and cleaned tables and raised $738 for The Kidney Foundation. Funds raised will be dedicated to the 2013 Hawkesbury Walk.

Fall Fundraiser of Hope p Sabrina Colella organized the Fall Fundraiser of Hope to raise funds for The Kidney Foundation of Canada. As a kidney transplant recipient who lived with kidney failure most of her life, she wanted to organize a special event to raise awareness about kidney disease and organ donation. The Toronto area event provided a unique opportunity to educate her community about the struggles of living with kidney disease while providing a wonderful opportunity to share her story and hopefully inspire others to consider registering to be an organ donor. Beyond education and awareness, Sabrina and her supporters raised over $10,000 to support The Kidney Foundation.

A Close-Knit Group p This group of knitters who call themselves “The Thursday Morning Crafters” took up a project to knit afghans as Christmas gifts for some of the dialysis patients at the Ottawa General Hospital. The group is from the east end of Ottawa, and as their name suggests, they have been meeting and knitting together each Thursday morning for many years. They like to put their talents together for charitable causes and this year, under the leadership of Gwenneth Mifflin, the group chose to knit and donate 18 afghans which hopefully brought a little joy and warm comfort to our kidney patients. The patients were very excited to receive them.

www.kidney.ca/ontario

Winter 2013 / Kidney Living /

COMMUNITY HIGHLIGHTS 28

Stand Up for a Cure, London

April 6

For more details about these events and future happenings in your community, call The Kidney Foundation of Canada office nearest to you (see p. 2), or visit www.kidney.ca/ontario. Visit www.kidney.ca/ontario for the latest event postings.

March

1-31 Kidney Health Month & March Drive Door to Door Campaign 1-31 Chili Promotion, at Wendy’s Restaurants in Sault Ste. Marie 2 Italian Night, Ottawa 2 Shake the Foundation, Renfrew 7 Blue and Green Soirée, Ottawa 12 Kidney Connect Peer Support Group Meeting, Kitchener 14 World Kidney Day, Not so easy chair demonstration, Windsor 19 Kidney Connect Peer Support Group Meeting, Brantford and Thunder Bay 20 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 21 Launch of African Caribbean Kidney Association, Scarborough 25 Kidney Connect Peer Support Meeting, Mississauga

Kazman Kidney Dinner Dance, Brampton 17 Kidney Connect Peer Support Group Meeting, Kitchener and Thunder Bay 17 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 20 Honey Do Charity Ball, Thunder Bay 20 Kuts for Kidneys, Sault Ste. Marie 21-27 National Volunteer Week 21-27 National Organ and Tissue Donation Awareness Week 28 Alive to Strive Race, Ottawa

May 4

9 14 15 21 23 27 28 29 30

June 14

Ontario Branch Annual General Meeting and Volunteer Reception, Ottawa Celebrity Men in a Fashion Event, Kitchener Kidney Connect Peer Support Group Meeting, Kitchener Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa Kidney Connect Peer Support Group Meeting, Thunder Bay Celebrity Men in a Fashion Event, Sarnia Kidney Connect Peer Support Meeting, Mississauga Kidney Connect Peer Support Meeting, Brantford 13th Annual Windsor Star Pasta & Pizza Fest, Windsor Golf Challenge, London Christine Labrasceur Memorial Golf Classic, Sarnia

14 15 19 19 19

July 6

9 15 16 17 22 22 26 29

Hamilton Kidney Golf Tournament, Hamilton Lions Camp Dorset Appreciation Day, Dorset Kidney Connect Peer Support Group Meeting, Kitchener, Thunder Bay Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa Kidney Foundation Golf Tournament, Kingston 7th Annual Biz X Beach Jam Volleyball Tournament, Tecumseh Kazman Kidney Classic, Milton Kidney Connect Peer Support Meeting, Mississauga Kidney Connect Peer Support Group Meeting, Thunder Bay Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa HUB International Golf Classic, LaSalle The Ladies Tom Turkey Golf Tournament 2013 Golf Classic, Timmins Kidney Connect Peer Support Meeting, Mississauga

Stand-Up for the cure

 The Kidney Foundation of Canada thanks you for your support. The personal contact information that we have on file for you is used for the purpose of sending you this publication. From time to time we may use your contact information to keep you informed of other activities, events and/or fundraising opportunities in support of the Foundation. Should you, at any time, wish to be removed from any of these lists, kindly check below and mail this back to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1, or contact us via email at grose@kidney.on.ca. Please allow up to 30 business days to update our records.

Yuk Yuk’s London

q Please take my name off the contact list for this newsletter. q I do not want my name to appear on The Kidney Foundation of Canada’s other contact lists. Indicate your name and address as it appears on the mailing label or include the mailing label with your request.

March 28

_________________________________________________________________________________

Tickets only $25!

_________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ If you have any questions or need more information about how the Foundation respects your privacy, email us at privacy@kidney.ca, Attention: Chief Privacy Officer.

/ Kidney Living / Winter 2013

www.2013WorldKidneyDay.ca www.kidney.ca/ontario

BUILDING A FOUNDATION

2013 Membership Application and Renewal Form Mail your completed form to your local Kidney Foundation office. See p. 2 for a complete office listing.

Count me in! I want to support the work of The Kidney Foundation of Canada. Please print clearly

Name _______________________________________________________________________________________________ Address ______________________________________________________________________________________________ City ____________________________________________ Prov _____________ Postal Code ____________________________ Phone _______________________________________ Email __________________________________________________ $10 Voting Membership + $___________ Donation = $___________ total. All donations are gratefully accepted. Your contribution will help us provide needed services in your community. Method of Payment: q Cheque

q Visa

q MasterCard

Credit card # _____________/_______________/____________/____________

Expiry_________/__________

Signature ____________________________________________________________________________________________

Please complete the following information as we are very interested in developing a profile of our membership. The information will be held in confidence. q I have kidney disease q I am on dialysis q I have a kidney transplant q I do not have kidney disease q I am related to someone who has kidney disease q I am a healthcare professional q I am interested in the work of the Foundation I am q 17 or under q 18 to 29 q 30 to 44 q 45 to 59 q 60 to 75 q 76+

www.kidney.ca/ontario

The Kidney Foundation of Canada â&#x20AC;&#x201C; Ontario Branch Annual General Meeting

May 4, 2013 â&#x20AC;˘ Ottawa

Call Carol Kostoff at 1.800.387.4474 ext. 4972 for more information. www.kidney.ca/ontario

Winter 2013 / Kidney Living /

April 21 â&#x20AC;&#x201C; 27 The Kidney Foundation is thankful to the more than 15,000 volunteers who help us achieve our vision of improved lives for all people living with kidney disease. Your support makes a tremendous difference.

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Postmaster: Please return undeliverable Canadian addresses to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1