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					KIDNEY

living
www.kidney.on.ca
A PUBLICATION OF THE ONTARIO BRANCH

Summer 2008 Volume 1 • Number 2

Opening the Tap
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Contents

10 3 5 7 8 11 12 13 14 15
Opening the Tap for Home Hemodialysis

Special Delivery The Kidney Foundation of Canada will once again work with the Royal Canadian Golf Association at this year’s Canadian Open Golf Tournament at Glen Abbey in Oakville. We are looking for volunteer assistance with the supervision of the parking lots for the tournament running three shifts a day from July 21-27. Volunteers are allowed access to the tournament after their shift and have access to the volunteer tent for discount-priced food and drinks. For more information about this volunteer opportunity, please contact the Central Ontario Chapter Events Department at 416-445-0373 or 1-800387-4474.
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, 9-35 Goderich Rd., Hamilton, ON L8E 3P2, or contact us via email at trish@kidney.ca. Please allow up to 30 business days to update our records. 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. ________________________________________ ________________________________________ ________________________________________

Unleashing Advocacy for Your Loved One on Dialysis A Fine Art The Spirit of Philanthropy KFOC Services Better Pack a Cooler! Give the Gift of Life Walk Kidney Events Calendar Live to Give – Honouring Our Volunteers

Cover photo: François-Réné Dussault. Credit: Julie Oliver/The Ottawa Citizen. Reprinted by permission. See story p. 3.

The Kidney Foundation of Canada, Ontario Branch 2008-2009 Board of Directors
Executive Peter Davis, President Riva Grinshpan, Past President Stephanie Bowman, Vice President Maria Carnahan, Vice President Harvey Thomson, Vice President Fred Peters, Secretary Roland Henricksen, Treasurer Dr. Ted Toffelmire, Medical Advisor Directors at Large Margaret Hanlon-Bell Desmond Levin Julie Maciura John L.P Thorne . Terry Young Dr. Jeff Zaltzman Chapter Presidents Richard Harvey, Central Ontario Leanne McDougall, Eastern Ontario Steve Smith, Hamilton & District Derek Shaw, Kingston Janet Morgan, Northern Superior Tim Phillips, Sarnia–Lambton Kirk Patterson, Southwestern Ontario Marlene Smith, Timmins–Porcupine Hélène Beaulieu, Western Ontario Brian Porter, Windsor & District Executive Director Jim O’Brien Ontario Branch 700 – 15 Gervais Dr. Toronto, ON M3C 1Y8 1-800-387-4474

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

Canadian Publications Mail Agreement #40011479
Return Undeliverable Canadian Addresses to: Trish Reynolds, Communications Manager, Circulation Department, 35 Goderich Road, Unit #9, Hamilton, ON L8E 4P2; email:trish@kidney. ca. Phone: 905-318-8627 or 1-800-414-3484

www.kidney.on.ca 
/ Kidney Living / Summer 2008

________________________________________ 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.

Feature COVER STORY VOLUNTEERS

Opening the Tap for Home Hemodialysis

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t has been said that water, given time, can crumble a mountain. FrançoisRené Dussault, 38, used water bills and time to move one. The mountain, in this case, was Ottawa City Hall. And the movement was a victory for many home dialysis patients in his city. In 2003, Dussault’s kidney transplant failed after two years. After a few months on in-hospital hemodialysis, he was able to switch to nocturnal home hemodialysis, which allowed him to return to work full time as a lawyer with the Federal Department of Justice. He first noticed something odd about his water bill three months later. “I received my bill and noticed a huge increase. My bill had gone up by almost five times. I knew the home dialysis machine used a lot of water, but I never realized it would be that expensive.” With some help from the staff at the Ottawa Hospital renal unit, Dussault figured out he was using almost 2,000 litres of water for every eight-hour dialysis treatment

at home. Like many who use the nocturnal system, Dussault would dialyze five nights a week, allowing him the freedom to eat a wider variety of foods and reduce his liquid intake restrictions. “I have used all types of dialysis, but this is the best I have ever felt undergoing treatment. Nocturnal dialysis has allowed me to exercise, eat well and even feel good enough to travel to France to visit with my

François-Réné Dussault. Photo credit: Julie Oliver/ The Ottawa Citizen, used with permission.

The fact that my water bill went from $226 one year to $932 the next seemed to get his attention.
family. But I was amazed at the amount of water it uses. And I couldn’t believe the extra price I was paying to be healthy.” In September of 2004, he wrote to the Minister of Health. Several months passed and the Minister’s office turned his file over to a local representative who,

several months after that, told him it was a municipal matter. “So, I called my city Councilor, (Diane Holmes) and after a few months, finally met with her. I explained the situation and showed her the water bills.” He also brought along members of the hospital’s renal team who provided more information for the councilor to look over. “She called up the Chief Medical Officer for the City of Ottawa who agreed that this was a problem. The fact that my water bill went from $226 one year to $932 the next seemed to get his attention.” Then came the meetings, the phone calls and the committees. Finally, in September of 2006, a full two years after he wrote his first letter, the City of Ottawa passed a motion to budget $10,000 towards water rate rebates to the approximately 20 individuals in the city undergoing home hemodialysis. Summer 2008 / Kidney Living /



Feature COVER STORY Figuring out who would handle the money, and how the application process would work took another 17 months. On January 9, 2008, nearly three and a half years after Dussault addressed an envelope to the Minister of Health, the City of Ottawa formalized the application process for the “Home Dialysis Grant/Water Consumption Relief ” program and notified the renal clinic at the hospital that they would handle applications for rebates of up to $500 per year to patients undergoing water-intensive home-hemodialysis programs. “I don’t feel like I was very patient, but I guess when you keep busy, time flies by.” Dussault filled out the form and received his first water rebate in March, although he’s hoping he won’t have to fill out too many forms in the future. “I have been on the waiting list for a transplant for over four years. The hospital says I am getting near the top of the list. But I am glad I was able to get this done, so others can have the benefits of home dialysis without having to worry about the extra costs.” “I try to live my life as normally as possible. Nocturnal dialysis has let me do that.” 

The Kidney Foundation of Canada recently accepted a generous gift of $40,000 from Genzyme Canada. This investment in the Foundation is instrumental in moving forward the vision and mission of The Kidney Foundation. We appreciate the commitment and support of our pharmaceutical partners. Pictured above from Genzyme Canada are Brian Lewis, General Manager, Lee Ferreira, Director, Renal; Christine Strobele, Associate Director of Marketing, Renal International along with Kidney Foundation Ontario Branch representatives Jim O’Brien, Executive Director, and Susan Storey, Senior Director of Development.



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Feature ADVOCACY

Unleashing Advocacy for Your Loved One on Dialysis
For most patients and their loved ones, starting dialysis is a stressful life event.
by David Mendelssohn, Chief/Physician Director, Department of Nephrology, Humber River Regional Hospital, Associate Professor of Medicine, University of Toronto

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t is understood that without dialysis, death is the usual course, and so deciding to undertake dialysis treatment is often a difficult decision with no options. What is frequently not disclosed and not questioned, is how long life will be extended once dialysis treatments are started, and what the quality of life will be like. The truthful answer is that dialysis is only a half-way technology, such that patients live only one-third as long as their peers without End Stage Renal Disease (ESRD), and quality of life is reduced. Caregivers need to understand the factors which are reversible and controllable by the patient, family and/or health

care team in order to increase the odds that quality of life will be acceptable, and hospitalizations and death will be delayed as long as possible. Dialysis replaces only some of the normal functions of the kidney. That is why diet and medications must play such an important role in making these patients healthier. Skipped treatments, shortened treatments, dialysis with a tube in the neck, not following the kidney diet and not taking prescribed medications are important things to watch for and fix, if you can. In this regard, a pressing new issue has arisen that patients and families need to understand and address. Access to new

drugs and treatments varies considerably from province to province in Canada. Expensive new medications, which may lead to better health care outcomes, may not be available due to the cost constraining agenda of provincial government drug plans. Nephrologists are divided on whether this should be challenged or not. Some say that if no large trials show that these drugs reduce death rates and create cost savings that offset the expenses, then there is just not enough evidence to pressure our Ministries of Health. However, others (like me) say that since nephrology does not get enough funding for research such Summer 2008 / Kidney Living /



Feature ADVOCACY that the well designed, definitive trials are rarely done, then less strict criteria ought to be applied to allow for earlier access to promising therapies. After all, if a doctor would want a treatment for his own mother or father based on what is known, even if he/she would have to pay for it, then he or she should advocate loudly for improved access for all Canadian dialysis patients. However, kidney disease is not common and causes a loss of energy and a sense of dependency upon the system. Patients not yet on dialysis are healthier, but don’t yet face the burden of ESRD care and rarely get politically involved. The Kidney Foundation in Ontario promotes access to high quality care on behalf of patients and seeks to raise the profile of kidney disease with all levels of government, but it needs your help to take advocacy to a whole new level. If kidney patients and their loved ones are silent, their needs will not be given the attention they deserve. So, what can caregivers and loved ones of dialysis patients do? Urge the dialysis staff to provide the best care possible. Urge your affected family member to play an active, involved and positive role if they can, and/or help to make sure that the dialysis is optimized, and that diet and drug therapy instructions are followed. Ask the dialysis team if there are promising treatments that are just not available for your loved one, and, if there are, get angry and energized. And promote advocacy for kidney disease within our democratic society, in every way you can think of, from within the Kidney Foundation, or through other channels. Track down your local MP/MPP and ask why a treatment option is not available. Canada is a generous society that values equitable access to health care resources, but unless a problem is exposed, that generosity may never be unleashed. Let’s advocate together to unleash it. 

AdvocAcy And Self-AdvocAcy 101
Advocacy is speaking up about an issue or problem. When people speak up for themselves to resolve a problem, they are practicing self-advocacy. The skills for self-advocacy can be developed by anyone interested in learning to speak up for themselves or people they care about. People living with chronic conditions such as kidney disease can benefit from these skills as they may encounter issues related to their care, including access to dialysis and drugs, transportation, choices related to treatment and the impact that the condition has on family and friends. Family members of people living with kidney disease may be at an increased risk of developing the disease and could also benefit from developing self-advocacy skills. These skills enable patients and their family members to speak up and seek the help and support they need. Acting as your own advocate is an empowering experience that will help pave the way for solving issues in the future. Participating in decisions that affect you or your community has an added benefit of increasing your feeling of inclusion and it is always good to feel confident about playing a role in your care. Here are some tips for self-advocacy: • Define the problem or issue in specific terms • State the impact of this problem on you and your family • Talk to someone who is responsible for the issue • Avoid a confrontational style • Keep written records of names, dates, telephone numbers and addresses for all contacts Ontario Renal Voices (ORV) is an advocacy program of the Kidney Foundation that helps people develop the skills by providing support, material and information needed to meet local MPPs and advocate on your behalf or someone that you care about. By bringing your issues to the MPP, you are also helping others in your home constituency who are facing the same problem or situation. For more information about advocacy and the Ontario Renal Voices program, contact: Mary Floro-White Ontario Government Relations Coordinator The Kidney Foundation of Canada 700-15 Gervais Drive, Toronto, ON M3C 1Y8 416-445-0373 Ext. 253 mflorowhite@kidney.on.ca

1-866-788-2277 kidney.on.ca



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Feature PERSONAL STORY

A Fine Art
George received a precious gift from a friend that changed his life forever.

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s a graphic designer, Brantford resident George Blahitka makes his living by taking ideas from clients and turning them into works of art. George, 37, received his kidney transplant in 2005. His donor is Rebecca Glynn, a friend and co-worker. “I knew Rebecca for several years before this all happened. We had met at a company I was doing design work for, and we became friends. When she heard about what was happening, she offered to get tested right away. Her Dad is a doctor, so she knew what she was getting into.” “The blood tests came back, and she was a match. When she went back for the last tests, I didn’t sleep for two or three days, waiting to hear.” Fortunately, the wait was worth it. “Turned out she was a perfect match.” George first learned he needed to start dialysis at the same time as he began attending college. “When I went in for the talk about dialysis, it was very sudden. My potassium was high, I was in bad shape, and the doctor said ‘Okay, you have to pick which kind of dialysis you want, right now.’ The doctor said I was a walking time bomb.” He started dialysis immediately. Starting school was a challenge both physically and socially. “It’s hard to have much of a social life. My friends would call and ask, ‘Want to go out and see a movie?’ and I’d have to say no, as I was usually fast asleep by the time they were just buying their tickets.”

A lack of energy made everything more difficult, especially when you consider the demands on someone starting their education. “When you start dialysis, you’re tired, all the time. All I wanted to do was sleep. You don’t feel like doing much. You don’t feel like leaving the house. While I was at school, and my friends were having a coffee between classes, I was in the nurse’s station, on dialysis.” Despite having to mange both homework and his own health care, George graduated and worked for a design firm before starting his own company, Aardvark Illustration. He also developed an artistic side project while undergoing his thrice-weekly dialysis sessions. “I discovered that, along with the design work, I really enjoy painting, and it turned out to be something I could do to fill the hours spent hooked up to a machine.” As a result, George has added a side business to his venture, and uses photos to create customized paintings of people’s homes and cottages. Once Rebecca was given the green light to donate her kidney, things moved quickly, and soon George woke up in hospital with a new kidney. Unfortunately, it was one that wasn’t quite “awake.” “Sometimes, it takes a while for a transplanted organ to wake up and start working. In my case, it took quite a while,” said George. After five nervous months on occasional dialysis, Rebecca’s

donated kidney finally started working at 100 percent. Now, as an independent businessman, George can spend his time worrying more about finding customers than finding a donor. As for Rebecca? “I talk to her all the time. She asks me “How’s my other half doing?” George says he knows how fortunate he is to even be considered for a kidney transplant, never mind finding a donor. He now spends time volunteering with the Kidney Foundation, last year donating his artistic talents to the annual gala. “More people should fill out their organ donor cards, and talk to their families about their wishes.” said George. “Not everyone is lucky enough to have a friend like Rebecca.” 

Summer 2008 / Kidney Living /



Feature BUILDING A FOUNDATION

The Spirit of Philanthropy

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ore than 650 guests attended this year’s annual Central Ontario Chapter Gala evening—a celebration of philanthropy in all its many forms. We tend to associate the word philanthropy with raising money, but philanthropy is not only about raising money, it’s also about giving one’s energy, commitment and time for the good of others. Dr. Martin Luther King Jr. once said: “Everybody can be great... because anybody can serve. You don’t have to have a college degree to serve. You don’t have to make your subject and verb agree to serve. You only need a heart full of grace. A soul generated by love.” We are fortunate to have many dedicated donors and volunteers who serve the Foundation in so many ways. Gala Honorary Chair Riva Grinshpan spoke eloquently about her experience in volunteering for the Foundation and why she chooses to support our cause. “Through my time with this wonderful organization, I have begun to understand the face of kidney disease. The people I have met, and the stories they have shared—this experience has opened my eyes. We have come so far in the past 40 years with new treatments and better outcomes for people who have had a transplant. But there is much more we can and need to do. Seeing the needs keeps me inspired—sensing the progress keeps me engaged.” Riva added, “I must also say that I get much in return through my volunteer work with the Foundation. I know many of you feel this same way; helping our friends and giving back to our own community improves our own futures and that of our families.” Gala Chairs Allen Eisen and Lois Eisen shared their personal story about their journey with organ donation; Lois donated a kidney to her brother Allen. The sibling team has been involved with The Kidney Foundation for several years as volunteers and donors. Through the years, as volunteers and employees, we are inspired by the people we have worked with and those who have

benefited from the research and programs to which the Foundation is so dedicated. It is the daily dedication of the volunteers and donors who quietly do their part each and every day, which truly makes a difference. The spirit of joining together was illustrated by the strong support of volunteers, sponsors and donors on Gala night. An event like this would not be possible without the efforts of the Gala’s dedicated volunteer committee. Many thanks to Robin Duke for her outstanding contribution as our event emcee and to Vivian Nicole, The Marginal Donors and the Downtown Jazz Band for sharing their musical talents. We are pleased to report that more than $400,000 was raised to support the mission of the Foundation—a true reflection of The Spirit of Philanthropy. We wish to thank the following sponsors for their support of the evening: The Keenan Foundation, Amgen, Swarovski, Humbertown Jewelers, Ortho Biotech, Astellas, Baxter, BHC Renal Care, Genzyme, Second Cup, Dorsay Development, Great West Life, The Grinshpan Family, Research Capital, Sanofi Aventis, Bristol Myers Squib, SimEx-Iwerks, Werger Holdings, Colliers International, Haywood Capital Markets, Wyeth. 

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u 1 Robin Duke, Emcee •  “You Make a Difference” was sung by Vivian Nicole, with a backdrop of slides showcasing Kidney Foundation volunteers, patients and their families •  Central Ontario Board member Lynn Knudson and her husband, Brian, are picture perfect with this performer from Zero Gravity Circus Productions •  Riva Grinshpan, Honorary Chair, and her husband, Menashe •  Chairs Allen Eisen and his sister, Lois Eisen •  The Downtown Jazz Band entertained during the cocktail hour as guests picked up their auction winnings •  Guests try out the basketball net before placing their bids on silent auction items •  The Marginal Donors performed. This group is comprised of some of Toronto’s best transplant surgeons and specialists.



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Feature WORKING TOGETHER

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Feature PERSONAL STORY Feature PERSONAL STORY

Special Delivery
It wasn’t so long ago that women like me with IgA Nephropathy were told not to have a child.
by Heidi Westfield

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y son Matthew is a healthy baby with an impish grin. He likes to laugh and cuddle and play with his toy dog Caesar. I got lucky. Today, getting pregnant with kidney disease is still risky, and can end badly. But I beat the odds thanks to a dedicated doctor, a supportive husband, and the help of The Kidney Foundation. I was diagnosed with IgA Nephropathy about seven years ago. It’s a disorder that occurs when IgA—a protein that helps us fight infections—settles in the kidneys. It is the most common kidney problem among young people. The diagnosis didn’t affect my life much at first. Then in 2006 my fiancé and I wanted to get married and start a family. That’s when the reality of kidney

disease really hit. “Too sick to have a baby?” I remember thinking. I was taking pills to control blood pressure and protein, but still felt pretty good. It came as a shock to find out how fragile my health really was. I was frustrated and angry; how could this happen to me? The day I looked to The Kidney Foundation for help was a turning point. Staff there, through the Peer Support Program, put me in touch with a woman who was able to overcome her kidney condition to have a child. Her story encouraged me to see past the frustration, to see the illness as more of a challenge than a roadblock. My husband and I met with Dr. Michelle Hladunewich, a Toronto nephrologist who specializes in pregnancy at Sunnybrook

Hospital. She helps women with a range of kidney diseases have children. At that point, I was in stable condition with an estimated 40 to 50 percent kidney function—the riskier end of the spectrum. There was potential for fetal growth problems, high blood pressure, pre-eclampsia or a premature child. There was also this frightening statistic: a one-in-three chance of losing kidney function altogether. At age 37, it was now or never for a pregnancy. My husband and I decided to go for it, but be as cautious as possible. I took a leave of absence from work, and improved my diet and overall physical condition before trying to get pregnant. Then my drugs were changed, replacing the ACE inhibitors with labetalol, a safe drug for the

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Feature WORKING TOGETHER fetus. A few months later, a pregnancy test came back positive. We were on the road to having a child. I was now being monitored closely by both my nephrologist and the Mount Sinai Special Pregnancy program. Every day, usually in the morning and at night, I would check my blood pressure at home and email the results to Dr. Hladunewich. A few months in, I was given a blood pressure machine that uses blue-tooth technology. The data went through my phone line directly into the doctor’s computer. Usually, taking just labetalol, the readings were in the healthy range. Later, in the second trimester, the readings began to dip low or spike high, becoming difficult to manage. Once my blood pressure really shot up, and I got a call from Dr. Hladunewich. She was on vacation with her family in Florida but was checking readings from there. She was able to adjust my medication and keep me on track. That kind of quick response—and the technology allowing for it—was critical in keeping the pregnancy going. At 32 weeks—just over seven months— the baby was developing normally. We had crossed an important threshold but I was starting to feel exhausted. A week later I had a series of doctors’ appointments in one day. At the last appointment they checked my blood pressure. Within minutes, I was whisked away to the Mount Sinai Intensive Care Unit. The next week in the hospital was hair-raising. I couldn’t have got through it without my husband literally at my side night and day. (He had moved in to the hospital room with me.) Even with extra medications, my blood pressure and creatinine levels were dangerously high. Everyone was on edge. Should we wait? And for how long? Five days after being admitted, I had an emergency C-section. My mother-in-law’s prayers were answered; we had a healthy baby boy. Premature at 33 and a half weeks, but far enough along that there were no problems. That night, Dr. Hladunewich slept well for the first time in months. I fell asleep, for the first time, as a mother. I came to understand that night how advances in medical research and technology affect real people. Canada’s kidney community gave my husband and me a son. With better medicines and great doctors in Canada, there will be more success stories. And for women with kidney disease, that is good news. 

KFOC Services
Research
The Kidney Foundation of Canada is dedicated to the funding and promotion of high quality research. Since 1964, the Foundation has awarded more than $80 million to support kidney-related research nation-wide. Ontario researchers were awarded over $1 million by The Kidney Foundation of Canada for 2007/08. The funds support research in the areas of kidney biology, renal failure, transplantation, dialysis, diabetes, cancer, glomerulonephritis, urology, genetics and kidney development. In Ontario, kidney-related research takes place at the University of Western Ontario (London), McMaster University (Hamilton), Queen’s University (Kingston), The University of Toronto and the University of Ottawa and their affiliated research institutes and academic health sciences centres.

The Kidney Foundation of Canada’s range of patient services is designed to provide for the special needs of individuals living with kidney disease, their families and others involved with their care and wellbeing. All branches and chapters of The Kidney Foundation offer an Information and Referral service, distribute the patient manual Living with Kidney Disease, and provide short–term financial assistance to eligible patients. The Peer Support program, available province-wide by calling 1-877-202-8222, connects patients with volunteers who have been specially trained to provide support and information, in confidence, about the diagnosis of kidney disease, treatment modalities, and transplant issues. Other patient services programs offered vary depending on local community needs and resources.

Patient Services

Educational Programs

To inform the public about kidney disease and related disorders, The Kidney Foundation publishes a series of educational pamphlets. The information is presented in an easyto-read question-and-answer format. These brochures and other information can be obtained through the branch or chapter. They can also be viewed on The Kidney Foundation Ontario website at kidney.on.ca.

Organ Donation Awareness

The promotion of organ donation has been an integral strategy of The Kidney Foundation since the 1970s. The Kidney Foundation works together with representatives from healthcare, industry and government to improve organ donation rates in Canada.

Government Relations and Advocacy

The Kidney Foundation promotes access to high quality health care by providing input into the development of provincial health policy through meetings with ministry staff, participation in LHIN planning groups, Ministry of Health task forces; development of written submissions on specific issues; special mailings to all Ontario MPPs in March and to promote awareness of organ donation during National Organ and Tissue Donation Awareness Week in April; and Ontario Renal Voices, an outreach program designed to increase understanding by MPPs of the impact of kidney disease on individuals and their families. 

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Feature EAT TO LIVE

Ontario Branch 700–15 Gervais Dr. Toronto, ON M3C 1Y8 416-445-0373/1-800-387-4474 kidney@kidney.on.ca CHAPTER OFFICES Central Ontario 700–15 Gervais Dr. Toronto, ON M3C 1Y8 416-445-0373/1-800-387-4474 kidney@kidney.on.ca Eastern Ontario 400C–1150 Morrison Dr. Ottawa, ON K2H 8S9 613-724-9953/1-800-724-9953 eob@kidney.ca Hamilton & District 35 Goderich Rd., Unit 9 Hamilton, ON L8E 4P2 905-318-4830 ttkidney@cogeco.net Kingston c/o Kidd House 100 Stuart St. Kingston, ON K7L 2V6 613-542-2121 kate@kidney.ca Niagara & District 391 Vine St. St. Catharines, ON L2M 4T9 905-934-4083 ttkidney@cogeco.net Northern Superior 1111 East Victoria Ave. Thunder Bay, ON P7C 1B7 807-624-2680 kidney@tbaytel.net Sarnia-Lambton 546 Christina St. N., Main Floor Sarnia, ON N7T 5W6 519-344-3462 elaine1@slkidney.org 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 379 Dundas St., Suite 119 London, ON N6B 1V5 519-850-5362 kidney@execulink.com Timmins-Porcupine 11357 Hwy. 101 E. Connaught, ON P0N 1A0 705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District 330–300 Tecumseh Road East Windsor, ON N8X 5E8 519-977-9211 kidney@mnsi.net Western Ontario 569 Lancaster St. W., Unit A Kitchener, ON N2K 3M9 519-742-2023 kidneykw@kidney.ca

Better Pack a Cooler!
Do you know the importance of keeping food safe during warm weather?

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veryone loves to hit the great outdoors during the warm weather. For most of us, food plays a large part in our summer activities, but it is important to keep in mind that warm temperatures—ideal for picnics and barbecues—also provide an inviting environment for bacteria and other pathogens in food to multiply rapidly and cause foodborne illness. That’s why in warmer weather it is especially important for people to take special precautions when preparing perishable foods such as meat, poultry, seafood and egg products. The Kidney Foundation of Canada urges outdoor enthusiasts to stay safe this summer by keeping perishables cold or frozen until ready to cook or serve. During food preparation, meat, chicken and seafood should not be left out at room temperature for more than two hours. On very hot days, when temperatures rise to 32° C or higher, reduce that time down to one hour. Most people don’t realize that even for a short period of time, perishable food is very susceptible to bacteria growth. By simply packing your food in a cooler with lots of ice, you greatly reduce the threat of foodborne illness. Remember that a full cooler will maintain its cold temperatures longer than one that is partially filled. Be sure to pack plenty of extra ice or freezer packs to ensure a constant cold temperature. When carrying drinks, consider storing them in a separate cooler to avoid opening the food cooler frequently.

How does E.coli bacteria make you sick?
E.coli bacteria produce a toxin which can cause damage to red blood cells, the kidneys and other organs. In 10 percent of children, E.coli infection leads to Hemolytic Uremic Syndrome (HUS), which is one of the leading causes of acute kidney failure in children. E.coli is most dangerous to young children, elderly adults and people with immune problems. For more information on food safety, visit kidney.on.ca/resources_publications to view a brochure on E.coli bacteria, or visit canfightbac.org. 

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Photo credit: Big Stock Photos

Feature WORKING TOGETHER

Give the Gift of Life Walk
Looking at this remarkable boy with a grin that goes from ear to ear, you would never know that he has overcome so many challenges in his young life.
by Pam Logan, Chapter Manager, Eastern Ontario Chapter

Bettina and Dawson at the 2007 walk in Ottawa

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ast year, Dawson Corbett led his nine-member Green Kidney Beans team in the Be A Lifesaver Walk in Ottawa. This is the second year they participated. The seven-year-old finished the full five kilometers. Dawson’s kidney problems were diagnosed before birth. During a random ultrasound at 36 weeks, Dawson’s mother, Bettina Redtman, was told that his kidneys were not developing properly. Labour was induced 24 hours later and doctors painted a grim picture. Dawson was born with Posterior Urethral Valves. Bettina remembers a lot of mixed emotions at the time. She would look at her newborn and wonder, “How could this beautiful, healthy-looking baby be as sick as they say?” “When the doctors spoke with us about Dawson’s condition, I just blocked it out because I thought… ‘Nope…not listening, you are wrong!’” When the realization hit that the doctors were not wrong, anger and fear followed. Why is this happening to us? What’s going to happen next? And then, finally acceptance. In the early years, Dawson’s condition was treated with constant medications, injections and surgeries. His parents had to measure, weigh and record all of his food and fluid intakes. He needed feedings via a machine throughout the night. All of this took a strain on the family. By the time Dawson was four years old his kidney function was declining rapidly. Bettina proved to be the best match for a transplant. “When the time was confirmed to go ahead with the surgery and during the whole preparation for transplant it was very surreal. All of the fears and worries came back. But despite that, “I was grateful and felt blessed that I was able to be the donor and that we could avoid dialysis,” recalls Bettina. Dawson’s father Patrick stayed by his side throughout the transplant. The transplant took place on May 6, 2004 and just two months later Dawson proudly walked his mother down the aisle as she married Dwayne. “It was quite emotional,” says Bettina. The happy extended family includes Cynthia, 11 and Tyler, 14. Now brimming with energy, Dawson is a shining example of the benefits of transplantation. In an interview for CTV Ottawa, he beamingly said, “It’s really special to have some love in me by Mommy.” But from Bettina’s perspective, “He calls me his hero…but little does he know that he is my hero. Despite all the ‘owies,’ what Dawson called needles, he always kept that glowing smile on his face.” But there is more good news about the Green Kidney Beans Team. When Bettina first learned about the organ donation themed walk through The Kidney Foundation Ontario website, she approached her co-worker, Celine Bedard, who was also dealing with kidney problems. “Count me in as part of the team,” was Celine’s quick response. Just a month ago, Celine received a kidney transplant from her sister. Both are doing very well. As Bettina says, “Celine and Dawson have a special bond. It is so nice to see them together. We look forward to many more walks to come.” 

By the time Dawson was four years old his kidney function was declining rapidly.

Give the Gift of Life Walk events will take place in communities across Ontario throughout the month of September, 2008. For details and registration information visit kidney.on.ca/walk. Additional walk locations will be listed as information becomes available. Summer 2008 / Kidney Living /

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Feature BUILDING A FOUNDATION

November

15 Black and White Night, Sarnia 15 Whoopi Night with the Lakehead University Thunderwolves, Thunder Bay TBD Silent Auction, Sault Ste. Marie 22 Kids 100 Hole Mini Putt, Thunder Bay

For more details about these events and future happenings in your community, call The Kidney Foundation office nearest to you, or visit www.kidney.on.ca.

June

15 Father’s Day Charity Golf Tournament, Gananoque 18 Kingston Chapter Annual Golf Tournament, Kingston 21 Summer Solstice, London 26 Much Music Dance, London

13 Pub Night, Ottawa 27 Fundraising Vocal Recital, Mississauga

lionS cAmp dorSet
Lions Camp Dorset, a camp for families affected by kidney disease, will celebrate its 30th anniversary this summer. On July 19, the camp is inviting alumni, guests and supporters to join them in celebration. For details on the special anniversary, watch for news in the coming weeks on the Camp Dorset website at lionscampdorset.on.ca or at kidney.on.ca. The Kidney Foundation of Canada has been a long-term supporter of Camp Dorset and provides assistance to families interested in attending. For information on attending camp, talk to your renal social worker.

October

July

4-6 Festival Epicure, Windsor 4,11,18,25 Meat Raffles, Sarnia 11 Kazman Kidney Classic, Brampton 12 Retroactive Much More Music Video Dance, Hagersville 12 HOPE Volleyball Summerfest, Ottawa 19 Camp Dorset 30th anniversary celebration (see sidebar, this page) 21-27 Canadian Open, Oakville

3 Oktober Fest, Thunder Bay 5 Patient Symposium, Mississauga 17-18 Comedy Festival Weekend, Thunder Bay 21 Pasta Dinner, Thorold 30 “Big Al’s Birthday” Gala, Kitchener 30-Nov. 9 Brush of Hope: Celebrity Paintings for Kidney Research 31 Halloween Freakers Ball, Thunder Bay TBD Halloween Tea, Sault Ste. Marie TBD Charity Auction and Dinner, London

August
1 5-9 7-9 12 17 19 21 23 23 23 23

Meat Raffle, Sarnia Canadian Transplant Games, Windsor Sarnia Pro Am, Sarnia Fore Ladies Only Golf Tournament, London Greenfield Charity Golf Tournament, Aurora Organ & Tissue Donation Awareness Charity Golf Tournament, Ottawa Hub International Golf Classic, Windsor Ride 4 Kidney, Mississauga Ride 4 Kidney, Timmins Rick Gatenby Memorial Golf Tournament, Niagara Falls Caring for Kidneys Golf Tournament, Sudbury

Get Kidney Living via email
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 trish@kidney. ca. Please put Change Kidney Living Subscription in the subject line.

e-newsletter

September

Give the Gift of Life Walk awareness events will be held throughout September in over 20 communities in Ontario. You, your family and friends can join us for a wonderful fall walk while raising funds and awareness about kidney health and organ donation. Online fundraising makes it easy. See the back cover of this magazine for a list of confirmed communities. 1 Football Pool, Sarnia

Get Kidney Foundation news direct to your inbox by registering for our free monthly e-newsletter today. Receive the latest news and information aimed at people living with kidney disease, their families and supporters. Find out about how the Foundation can help you, what you can do to support kidney patients, and what’s happening with kidney research in Canada. You’ll also receive regular e-alerts updating you about fundraising events, advocacy campaigns, new Kidney Foundation merchandise, and much more. Register today—visit www.kidney.on.ca and click on the ‘e-news’ button.

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/ Kidney Living / Summer 2008

Feature VOLUNTEERS

Live to Give
Celebration honours volunteer contributions

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he Kidney Foundation would like to thank the many volunteers, renal professionals, staff and patients who work with us each day to improve the lives of those living with kidney disease. Each year we single out a few of these tireless workers, recognizing their contributions to achieving the vision and mission of the Foundation. The following awards were presented at the Ontario Branch Annual General Meeting and Volunteer Celebration held in London on May 24. Volunteerism comes in many forms— from a dedicated board member, to a third party event organizer, to advocates for kidney health education. The Foundation is grateful to each of its many volunteers for their dedication and personal contribution. Congratulations are also sent to the many volunteers who were recognized locally at Chapter Annual General Meetings this spring. Your support truly makes a difference. The Alfred E. Coll Award of Excellence, Leadership and Distinguished Service was presented to tHarvey Thomson in recognition of an individual whose leadership and distinguished service has made a significant contribution to the organization. Harvey joined the Ontario Board in June last year as a vice-president. He was put to work immediately as the chair of the Transition Working Group to continue the work outlined in the Organizational Change Committee report. Harvey guided an enthusiastic team in working through a provincial consultation process which engaged all our communities in designing a different volunteer structure. The structure will position the Branch and, indeed the Foundation, to be more agile and responsive to our current and future opportunities as the organization of choice for those living with kidney disease. Marlene Smith,u President of the Timmins-Porcupine Chapter of the Foundation was named Volunteer of the Year in recognition of her

outstanding contribution and service in supporting the vision and mission of the Foundation. Marlene joined The Kidney Foundation in 1983 when her mother was diagnosed with kidney failure. In 1984, she sold peanuts as a volunteer. In 1985 Marlene become the president of the local chapter and hasn’t looked back since. Over the years she has garnered the respect of her peers and has a hard-working crew of volunteers to see her vision to fruition. She works the bingos, organizes fishing derbies, does all the paperwork—all as a volunteer. Marlene has dedicated a tremendous 24 years of volunteer service to The Kidney Foundation of Canada. Congratulations to the volunteers and staff at the Sarnia-Lambton Chapter for being named Chapter of the Year. SarniaLambton Chapter volunteers and employees are especially adept at building quality relationships in the community. There is a strong connection with the community, as demonstrated by its committed volunteer, donor and corporate partnerships which continue to expand year after year. The Chapter also maintains strong relationships with Sarnia-Lambton’s community health care partners and provides ongoing quality support to kidney patients and their families. The Public Awareness Award was presented to The Ottawa Citizen in recognition of their role in increasing the awareness of organ donation. The Citizen team published a series which took a comprehensive look at what life on the organ transplant waiting list is like. The resulting December 2007 series, “A Waiting Game,” was a ground-breaking multi-media effort which drew readers in a thought-provoking manner, shining a light on many little-understood conundrums of the system. The series tells the stories of everyday people facing Herculean challenges with varying degrees of success. Deano Demelo (pictured with his wife, Gina),u organizer of the Ride for Kidney (R4K) third party event received the Excellence in Fundraising Award in recognition of his leadership and development of R4K. Deano started the fundraising motorcycle ride in

2003 as a tribute to a young boy in Gina’s family who lost his battle with kidney disease. Each year since then, the ride has honoured someone whose life has been affected by kidney disease. Last year, the ride expanded to include a Timmins-area event. A tremendous amount of publicity, awareness and financial support has resulted from the efforts of Deano, his family and their R4K volunteer team. To date the rides have raised in excess of $25,000. The President’s Award, chosen by Ontario Branch Board President Peter Davis is presented in recognition of an individual or group who has assisted the President in advancing our mission and vision. This year’s recipients were a natural choice—the award was presented to the Ontario Branch Chapter Presidents: Hélène Beaulieu, Richard Harvey, Leanne McDougall, Janet Morgan, Jason Nieuwets, P Kirk Patterson, Tim . Phillips, Derek Shaw, Marlene Smith and Kathleen Spong. 

Hélène Beaulieu Richard Harvey

Leanne McDougall Janet Morgan

Jason Nieuwets

P. Kirk Patterson Tim Phillips Absent: Derek Shaw and Kathleen Sprong Summer 2008 / Kidney Living /

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walk
Give the gift of life

For The Kidney Foundation

Sunday, September 7, 2008 Guelph (Riverside Park) Kitchener (Breithaupt Park) Saturday, September 13, 2008 Toronto (High Park) Saturday, September 20, 2008 Blind River (Blind River Town Park) Iroquois Falls (Jus Jordan Arena) North Bay (Lee Park, Kate Pace Way) Sault Ste. Marie (Roberta Bondar Pavilion) St. Catharines (St. Catharines Museum at Lock 3) Manitoulin Island (McChigeeng First Nation) York Region (Richmond Green, Richmond Hill) Dryden (Royal Canadian Legion) Sunday, September 21, 2008 Brantford (Harmony Square, Downtown Brantford) Essex County (Colasanti’s Tropical Gardens, Ruthven) Hamilton (Willowcove Pavilion, Confederation Park) London (Greenway Park) Ottawa (Andrew Haydon Park) Sarnia (Sarnia Kiwanis Pavilion, Canatara Park) Saturday, September 27, 2008 Barrie (Lion’s Pavilion, Centennial Park) Windsor (Riverside Sportsmen Club) Sunday, September 28, 2008 Orangeville (Fendley Park) Chatham (Mudd Creek) Additional communities will be listed as information becomes available. For details and registration information visit kidney.on.ca/walk

In communities across the province this fall.

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