Kidney Living - Fall 2010

KIDNEY

living www.kidney.ca/ontario

Fall 2010 Volume 3 • Number 3

A PUBLICATION OF THE ONTARIO BRANCH

The Next Generation:

Families Connected by Kidney Disease

What’s in this issue – Fall 2010 3 4 5

In Praise of Volunteers

8 9

Making It Happen

10 11 13 14 17 18 19 21 22 23 24

The Martin Family Story The Medal for Research Excellence Award Recipient 2010 Francis Harvey Endowment Fund Established Choices Since You Asked . . .

You Came, You Spoke, They Listened Give the Gift of Life Walk

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Every day is a good day

On Call Vitamin B – A Word of Caution Recipe – Honey Ginger Crackles A Gift that Keeps on Giving Inspirations What’s for Lunch?

Community Highlights

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Exercise

The Kidney Foundation of Canada, Ontario Branch 2010-2011 Board of Directors

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

Executive Harvey Thomson, President Peter Davis, Past President Richard Harvey, Treasurer/Secretary Directors at Large Hélène Beaulieu Dr. Ann Bugeja Margaret Hanlon-Bell Christine Jowett Craig Kerr Doug Parsons Tim Phillips Brian Porter Marlene Smith Terry Young Dr. Jeffrey Zaltzman Micol Zarb Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003

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©2010. Kidney Living, the contents of which is subject to copyright, is published three 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.

Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses to: Trish Reynolds, Communications Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:treynolds@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 CHAPTER OFFICES Central Ontario 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca Eastern Ontario 401 - 1376 Bank St., Ottawa K1H 7Y3 613-724-9953/1-800-724-9953 eob@kidney.ca Hamilton & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 ttirone@kidney.on.ca Kingston 100 Stuart St. Kingston, ON K7L 2V6 613-542-2121 adminkingston@kidney.ca Niagara & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 ttirone@kidney.on.ca 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 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 1368 Ouellette Ave., Suite 310 Windsor, ON N8X 1J9 519-977-9211 kidney@mnsi.net Western Ontario (Kitchener/Waterloo) 379 Dundas St., Suite 119 London, ON N6B 1V5 1-800-667-3597 btrinh@kidney.ca

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

EDITORIAL

In Praise of Volunteers

by Harvey Thomson Ontario Branch President

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L to R: Andrew Hopkins, Volunteer Coordinator of the North Bay Walk, Ontario Branch President Harvey Thomson and volunteer Alice-Ann Hopkins.

“Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.” ~ Margaret Mead

www.kidney.ca/ontario

olunteers are the lifeblood of The Kidney Foundation of Canada and the key to our expanding capacity to help reduce the burden of kidney disease. Without volunteers, in partnership with Kidney Foundation employees working in communities throughout the province, there would be far fewer funds for research. Patients and their families would have less information and support in living with kidney disease. The public and governments who fund health care would be less aware of the seriousness of the disease and what needs to be done to prevent it. And initiatives to promote early screening for populations at risk and organ donation would be reduced.

Volunteerism is alive and well in The Kidney Foundation of Canada. On a driving tour of Northern Ontario, my wife and I visited groups of volunteers and chapter offices and witnessed the energy and dedication of volunteers in action. In North Bay and South Porcupine, we participated in Give the Gift of Life Walks to raise public awareness of kidney health and the importance of organ donation. Many of the volunteer organizers had themselves been impacted by kidney disease and they, their families and friends were exceptionally generous in raising funds for research, services, education and advocacy. In Thunder Bay we learned of a new initiative, funded in part by the local Lions Club, to offer a summer camping experience, within easy driving distance of dialysis for kidney patients and their families. For many it created a supportive environment that allowed them for the first time to share their experiences.

In Sault Ste. Marie, volunteers and employees, with strong support from the dialysis unit staff of the local hospital, held their Give the Gift of Life Walk; participants are particularly proud that one of their fellow walkers, Tracy Patrick, was once again recognized as Ontario’s top fundraiser. We finished our trip in Sarnia at the celebration of the chapter’s 25 years of fundraising, patient support and advocacy for those living with kidney disease. The event—chaired by the chapter’s very first volunteer president and attended by all but one of the presidents since then—highlighted the many contributions made over the years by volunteers, Kidney Foundation employees, renal professionals, and community and corporate partners.

So much has been accomplished and yet so much more needs to be done. We need to build our volunteer base in communities where we are already active. And we need to create a presence in other communities where the needs are great and resources are scarce. I know we have the volunteers and employees that are up to the challenge.

I saw them in action.  Fall 2010 / Kidney Living /

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PERSONAL STORY

The Martin Family Story It began in 1942 with the birth of my Uncle Art.

by Beth Martin, live related donor

Beth Martin with her Dad.

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he youngest of five boys, Uncle Art was born with kidney disease. As you can imagine, in 1942, kidney disease was not understood and there were no treatment options for someone with a kidney disease diagnosis. They did not have the benefits of the successful research we have today. In fact, The Kidney Foundation of Canada would not be established for another 22 years.

Dialysis certainly wasn’t an option here in Ontario, so my grandparents were told to take their son home with the expectation that he would probably not live to see his 10th birthday.

When Uncle Art learned of his kidney disease, he refused to allow his disease to make a difference. He got into the same amount of trouble as his older brothers and defied it by playing hockey—and he became an amazing goalie.

In 1962—still with no Kidney Foundation in sight—Uncle Art’s kidney disease took a drastic turn. He had outlived the doctor’s original prognosis and was now 20 years old. Still keeping his health condition to himself, he collapsed on the ice during a hockey game. Dialysis was still not readily available in Canada and the treatment consisted of draining the toxins from his kidneys—an extremely painful procedure.

The next plan was to take him to Boston to undergo dialysis on a machine that was larger than some buildings.

Unfortunately, Uncle Art passed away the morning he was scheduled to leave for Boston. He had a great future ahead of him as a talented hockey player and an even more talented singer. His future was taken away from him because of the limited knowledge of kidney disease.

Twenty years later, the words “kidney disease” were once again part of our life. The year was 1980 and my dad, Lynn, now faced a diagnosis of kidney failure. New awareness and research into kidney disease changed the outcome for my dad. His specialists put him on an experimental drug to slow the progress of his renal failure—and it worked!

For many years, Dad’s disease was manageable without any drastic interventions. Then about 10 years ago Dad’s kidneys decided they just couldn’t do it anymore and he was presented with dialysis treatment options—options that my Uncle Art did not have available all those years ago.

Dad was actually able to dialyze in the comfort of his own home, a procedure that allowed him to maintain his quality of life by continuing to frequent hockey arenas and golf courses. You can imagine how grateful we are for the strides made in kidney disease research, dialysis advances and stellar nephrologists, compared to what my grandparents faced all those years ago.

In 2006, after three years on peritoneal dialysis, Dad underwent successful transplant surgery and today he continues to lead a full life.

I felt it was important to share this story as it spans decades of one family’s journey alongside the journey of The Kidney Foundation. The impact of the research in chronic kidney disease has literally saved my dad. It is a “luxury”’ if you will, that my Uncle Art did not have all those years ago.

Our story paints a portrait of success, not only for our family, but for all those facing kidney disease today. The advances in prevention and the ability to delay the onset of end stage renal failure, the opportunities kidney patients have to choose dialysis methods that best fit their needs and lifestyle, can all be attributed to leading edge kidney research. From our family to yours, thank you for your support of the Foundation. Research does make a difference!  www.kidney.ca/ontario

MEDICAL RESEARCH

2010

The Medal for Research Excellence Award Recipient

“Dr. Burns has always been generous with his knowledge, expertise and insights. A wonderful mentor and teacher, he has contributed, and continues to contribute, enormously to the new and next generation of renal researchers.”

– Dr. Rhian M. Touyz, Canada Research Chair in Hypertension, Professor of Medicine and Senior Scientist, Kidney Research Centre, Ottawa Hospital Research Institute, University of Ottawa

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r. Kevin Burns, a leader in translating kidney research into patient-oriented practices and a clinician-scientist committed to training future scientists, garners The Kidney Foundation of Canada’s 2010 Medal for Research Excellence.

Past President of the Canadian Society of Nephrology, Dr. Burns currently chairs the Steering Committee for the Kidney Research Scientist Core Education and National Training (KRESCENT) Program, a unique national research-training program for clinical and basic science trainees that he played a key role in founding. Dr. Marie-Josée Hébert, Shire Chair (Université de Montréal) in Nephrology, Transplantation and Renal Regeneration notes that “Dr. Burns was instrumental in making the KRESCENT Program a reality. He still shows an incredible dedication and leadership to the training of young scientists who will be optimally prepared for developing innovative and multidisciplinary research programs.”

Dr. Burns’ research work has focused on the functioning of the kidney-based hormone system that regulates blood pressure and fluid levels (renin-angiotensin system or RAS). Recently, his laboratory has uncovered insights into the function of a RAS enzyme called ACE2, which may protect against kidney damage. Dr. Burns has

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MEDICAL RESEARCH also demonstrated a commitment to translating his studies at the basic science level to patients affected by kidney disease.

A graduate of McGill University, Dr. Burns completed his basic science research training at Vanderbilt University Medical Center (Tennessee, USA) before returning to Canada where he now wears many distinguished hats. Professor of Medicine in the Division of Nephrology at both The Ottawa Hospital and the University of Ottawa, he is also Senior Scientist and Director of the Kidney Research Centre at the Ottawa Hospital Research Institute, and Deputy Chair of Research in the Dept. of Medicine. He has published 79 original contributions and numerous papers for high-impact journals, and he has authored or co-authored seven book chapters.

CHANGING LIVES ONE DOOR AT A TIME OUR JO IN E N T IA L !

R E S IDA S S E R S V N A C

About The Medal for Research Excellence: Each year The Kidney Foundation awards The Medal for Research Excellence to a Canadian researcher whose work is recognized by peers for having improved the treatment and care of people living with kidney disease and related conditions. 

Did You Know?

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In the last 10 years, eight Ontario researchers have received the Medal for their outstanding contribution to kidney-related research. Interested in learning who they are? Visit www.kidney.ca and click on the research button.

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The Kidney Foundation of Canada funds over one-third of all kidney-related research in Canada and by the end of 2010, the Foundation’s total commitment to research will have exceeded $100 million.

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The Kidney Foundation funds research projects related to many areas of kidney disease including transplantation, dialysis, kidney biology, diabetes, high blood pressure, genetics and urology.

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Based upon the results of the 2010 granting competition, the Foundation has awarded grants, totaling approximately $3 million, to fund 60 projects.

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The Foundation’s review procedure for assessing research applications is rigorous.

Funding criteria include scientific excellence and relevance to the mission of The Kidney Foundation of Canada. Applications are evaluated by volunteers from the health care and scientific community, all of whom are recognized leaders in their field. A review committee ranks each application and determines which proposals are to be funded.

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Thirty-five Ontario-based research projects received funding in the 2010 competition year totaling more than $1.6 million.

 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. 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.

Have you received your call?

WE'RE BEHIND YOU ALL THE WAY

TO FIND OUT HOW YOU CAN BE A PART OF THIS YEAR’S MARCH

DRIVE, CONTACT THE KIDNEY FOUNDATION OF CANADA. VISIT

WWW.MARCHDRIVE.CA OR CALL 1.800.387.4474 ext. 4962

Answer the call and join our team of 16,000 volunteers who will help us change lives one door at a time.

We are now calling for volunteer canvassers for our annual March Drive. www.marchdrive.ca

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

_________________________________________________________________________________ _________________________________________________________________________________ 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.

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We are eager to read about you!

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PERSONAL STORY

Every day is a good day Twelve people in three generations of one family suffered from PKD.

by Stacey Scott

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Ron Hoffman, Loretta Raglin and Delores Wiesenberg participated in Pembroke’s Give the Gift of Life Walk 2010.

“I thought of dialysis as my life-line until a kidney came along”

www.kidney.ca/ontario

hen Delores Wiesenberg’s brother was diagnosed with—and would later pass away from—Polycystic Kidney Disease (PKD) in the early ’80s, the family was saddened by the loss. At the time, she was unaware that this genetic disease would continue to weave its way into her life for years to come.

After losing one of her brothers in 1983 to kidney disease, she soon learned that her mother, who was ill off and on for quite some time, also suffered from PKD and she died of kidney failure in 1985. Her surviving brother, who also suffers from PKD, is currently on the waiting list for a kidney transplant, and five of his seven children also have PKD. To date, her sister does not suffer from kidney disease.

Delores, who has long resided in Pembroke, is one of three siblings in her family to suffer from PKD, a disease that is believed to be carried down from her mother’s side. Her daughter and her two grandchildren also suffer from PKD. “We didn’t know we inherited this disease,” recalls Delores, who was diagnosed with PKD in the early ’80s.

“By 1992 I was seeing a nephrologist in Ottawa regularly, but I wasn’t taking it too seriously,” says Delores. “I wasn’t on dialysis and was very careful with my diet.”

Throughout the years her kidney function was decreasing and by January, 2001 she started peritoneal dialysis.

“I thought of dialysis as my life-line until a kidney came along,” recalls Delores.

After three years of being on dialysis, she suffered from a ruptured colon and was rushed to emergency and put in ICU on hemodialysis and taken off the transplant waiting list. After nearly three months spent fighting off infections and pneumonia, Delores was released and faced a slow recovery. After nearly three years she was placed back on the waiting list.

For the next two and a half years she would make the drive to Renfrew three times a week to the dialysis unit to receive her hemodialysis treatments. In 2007 a satellite dialysis unit opened up in Pembroke where Delores would continue her treatments.

Finally, in 2009 she received a long-awaited phone call and at the age of 74 Delores received a kidney.

“There is no comparison, living with this life-changing gift of a new kidney,” says Delores, who recently participated in the Give the Gift of Life Walk. “I intend to live my remaining years to the fullest by living a healthy and active lifestyle.”

She credits the generosity of an anonymous donor for giving her a new lease on life and is very grateful for the support she received from the Foundation.

“My motto is ‘Every day is a good day,’ thanks to the generosity and caring of the anonymous donor,” exclaims Delores, who recently celebrated her 76th birthday with her friends and family.  Fall 2010 / Kidney Living /

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ADVOCACY

Making It Happen How one voice can make a difference

by Stacey Scott

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ancy Cameron, elementary school teacher, hospital volunteer and mother of two, recently took on a new role: health advocate.

Last year, when Nancy’s eldest son, Scott, experienced sudden kidney failure, he was immediately put on dialysis. Like many family and friends of newlydiagnosed chronic kidney disease patients, Nancy soon realized her son’s diet had to be monitored very closely.

“I was finding it quite difficult finding food products and recipes that suited his needs,” recalls Nancy. “I couldn’t buy products or use recipes.”

Frustrated with the lack of nutritional information pertinent to kidney patients on most food labels and published recipes, Nancy, armed with knowledge and driven by passion, decided to take action.

In late 2009 she began to contact a number of large companies and publications with the hope of educating them on the importance of including nutritional information—like potassium—on food labels and recipes. She also met with her local Newmarket, Ontario M.P., Lois Brown, to advocate for change in the law to not only add potassium content to food labels, but also to allow home hemodialysis patients to do nocturnal dialysis six times per week as opposed to the standard three days per week.

After that meeting, Lois Brown wrote a letter to the Minister of Health on behalf of Nancy to highlight the difficulties kidney patients face. Nancy was also successful in getting a major Canadian publication to list potassium levels in recipes.

“The editor of Canadian Living responded favourably to my request, and now most recipes in Canadian Living magazine include the amount of potassium,” says Nancy.

Although she continues to contact other companies and publications to follow suit, she already has her sights set on tackling another item; travel-friendly dialysis machines in Canada.

Interested in learning more about advocacy and ways you can get involved? Looking for tools, and letter templates that can help you advocate for yourself or a loved one living with kidney disease? Visit the advocacy section at www.kidney.ca/advocacy. 

Your opinion matters.

Tell us what you think.

! p Fun er Cam Summ

In order to ensure that Kidney Living contains the content you are most interested in, please take a minute to answer the enclosed survey and offer your feedback how we can best meet your needs.

Please mail your completed survey to: The Kidney Foundation of Canada, 201-1599 Hurontario Street, Mississauga, Ontario L5G 4S1.

Prefer to fill in the online survey ? Visit http://www.surveymonkey.com/s/KidneyLiving2010

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PERSONAL STORY

Francis Harvey Endowment Fund Established Gwen and Richard Harvey contribute $50,000 to support research.

by Heidi Westfield

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hen Richard Harvey thinks about his mother, Francis, he remembers a woman with great courage and spirit. Richard and his siblings talk about their mother with tenderness and a deep respect.

Richard is a long-time volunteer with The Kidney Foundation of Canada and current Treasurer of the Ontario Branch Board. Recently, Richard and his wife Gwen made the decision to contribute $50,000 to The Kidney Foundation of Canada’s New Challenge Campaign.

They opted to make their contribution by establishing an endowment fund in Francis’ honour. The fund supports research into the type of kidney disease she lived with for many years. While this fund will support research into Medullary Cystic Kidney Disease – Type 2 (MCKD-type 2), a rare hereditary kidney disease, it is also available to assist in other research projects.

Francis was born in Ottawa, and raised five children. Her son Alex remembers her as a “ball of energy,” until she started to feel ill. “She became weaker and weaker, and it was very tough on her,” said Alex. There were endless blood tests because, at the time, doctors could not find a specific diagnosis. The family moved to Seattle and it was there that Francis discovered she had kidney disease and needed to go on dialysis.

After six years on dialysis, during which time she continued to make caring for her family a key priority, a transplant became available. Her son recalls how it changed her life. “It was just incredible,” Brian Harvey recalls. “She felt so liberated; it was like a rebirth.”

Richard’s connection to The Kidney Foundation of Canada has him following in his mother’s volunteer footsteps. In better health after her transplant and wanting to give something back, Francis decided to volunteer for The Kidney Foundation.

While saddened by the loss of their mother at age 58 when complications from the transplant arose, the Harvey family also knows how far medical research has come to assist those affected by kidney disease, and they have hope in future discoveries.

“My grandfather died of kidney disease at a much younger age than my mother,” said Richard. “In some ways she was fortunate, receiving treatment that was never available to him. She was able to go on dialysis, have a transplant and live a longer life.”

Richard, Brian and Alex have inherited MCKD-type 2 and have been able to better manage their kidney health by being armed with knowledge about their family history and through new treatment options for those identified as being at risk. Alex is on dialysis currently while Richard and Brian are being treated with medication.

Gwen and Richard hope that research supported by the Francis Harvey Fund will help many families live a healthier life and possibly lift the risk of kidney disease from future generations.

The New Challenge Campaign is a national campaign with the goal of raising an additional $15 million over the next four years. This new funding will support new discoveries through research, prevention and early diagnosis programs, and community-based initiatives to meet the unique needs of our diverse populations across Canada. It will support The Kidney Foundation’s goal to be a true leader and partner in kidney health in Canada. 

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WORKING TOGETHER

Choices There are things in life we can control, and things we can’t.

But at least we have choices.

by Trish Reynolds

The Kidney Connect Peer Support Program is a valuable resource that matches individuals with trained volunteers who have travelled a similar path and can share their insight and experience. Volunteers do not offer medical advice. Interested in learning more about the program or speaking with a Kidney Connect Peer Support volunteer?

Call Anne Brinkman at 1-866-390-PEER.

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ifty years ago, a diagnosis of kidney disease was fatal. Nephrology was a new discipline and patients with renal failure had few choices. Some were lucky enough to vie for the limited availability of dialysis spots, while others succumbed to the disease at a very young age.

While a diagnosis of kidney failure in 2010 is still marked with incredible challenges, it is staggering to think of the progress that has been made in the treatment of kidney failure. Initially the choice was to start dialysis or not. With strides in research, transplantation became another option and is now often thought of as the best available treatment option—although it bears noting that it is not an option for everyone.

Today, people faced with a diagnosis of kidney failure have greater options and can play an increased role in advocating for their health care, and making choices about the treatments that best fit their lifestyle.

Not only are different dialysis methods available, the ways in which dialysis is delivered continues to evolve. New home dialysis options may add the flexibility some people desire, while in-hospital dialysis may suit others better.

One thing is certain. You need to be informed and educated about what your choices are. It is important to explore and understand the information in order to make the best treatment decision for your lifestyle. Your healthcare team will provide information and support to help you and your family understand all the options and answer any questions. The Kidney Foundation of Canada’s website—www.kidney.ca—is an excellent resource to learn more about treatment options. As you make the decision with your renal team, you may look to others, such as peer support volunteers, for information that will help you as well. The type of treatment you receive depends on your medical conditions and what is most appropriate for your particular needs. It may also depend on what is available in your community. Each type of treatment has its strengths and limitations. Learning as much as you can about your options will assist you in making the right choice.

Questions about treatment options are the most frequently asked to Peer Support Program Manager, Anne Brinkman. “People want information, they want to learn from their peers and choosing a type of dialysis, making a change in treatment modality, or considering transplantation is certainly important and worth the time and effort for careful research,” said Brinkman. “Peer support is very effective when people are considering treatment options, as they can hear directly from someone who has experienced a particular type of treatment for example, and can ask about the kinds of things they took into consideration in making that choice.“ The collective experience of our Kidney Connect Peer Support volunteers is quite remarkable. As patients, family members and donors, they have varied experiences living with kidney disease, and understandably, have different values and needs. “Just hearing about someone else’s experience—their fears, challenges and successes—often provides people with the additional information they need to make their choices in consultation with their healthcare team,” added Brinkman. www.kidney.ca/ontario

WORKING TOGETHER

Quick Definitions

There are two types of dialysis. In hemodialysis, the blood is passed through an artificial kidney machine to clean it. Hemodialysis is done in a hospital dialysis unit.

Once a patient is stable, it may be possible to have treatments in a self care clinic or a location away from the hospital (often referred to as a satellite unit) or at home. Some dialysis centres in the province offer home nocturnal hemodialysis, whereby dialysis is carried out four to six nights a week for six to eight hours while you sleep.

Peritoneal dialysis uses a filtration process similar to hemodialysis, but the blood is cleaned inside your body rather than in a machine. There are different types of peritoneal dialysis: continuous ambulatory peritoneal dialysis (CAPD) or automated or continuous cycler peritoneal dialysis (APD, CCPD). In CAPD, you carry about two to three litres of dialysis fluid in your peritoneal cavity all the time. An exchange is usually done four times a day by draining out the old fluid and refilling it with fresh fluid. APD or CCPD uses a machine called an automatic cycler. The machine performs exchanges every night while you sleep. 

Since You Asked . . .

by Trish Reynolds

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e recently asked a group of peer support volunteers to share their insights about what they would consider to be some of the most important questions to think about or ask their healthcare team regarding the various types of dialysis. Posed as: If you knew then what you know now, what kinds of questions or considerations would have helped to guide your decision in choosing treatment that best fits your lifestyle?

Here are some of their responses…

Health • • • •

What types of dialysis are currently available in my community?

What type of dialysis best suits my personal health situation right now?

What impacts how long I can be on either hemodialysis or peritoneal dialysis?

Are there differences in how I manage my diet depending on the type of dialysis?

Which has the least restrictive diet?

• What are the effects on my body from dialysis—short term and long term? Which is least damaging to my body in the long term?

Lifestyle and Family • Which type of dialysis will allow me to feel my personal best, with the fewest restrictions, and allow me to live life the way I want to?

• Being able to travel is important to me. Will I be able to travel, and if so, which type of dialysis will let me travel most easily?

• What are the ramifications of my choice in the long term? How will it affect my lifestyle and that of my family?

• Which type of dialysis will give me the most flexibility with my personal time?

• What are the financial implications of the different dialysis treatments, e.g., transportation, increased water and hydro usage, increased garbage, costs of treatment when travelling?

Support • If I choose to do dialysis at home, how accessible will be my healthcare team be?

• What types of support would I require at home, if I’m doing some form of home dialysis?

• Is there a support person at home that can assist if I choose to do a form of home dialysis? What is their health situation? Is it reasonable that they can assist? What effect will it have on them long term?

• Are there community in-home support resources available? If so what are they and how would I access them if I needed them?

• If relying on a support person at home, what is their availability? Are they required www.kidney.ca/ontario

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MEDICAL RESEARCH to travel for their job? How often, and who will assist in their absence? Do they participate in hobbies, sports or activities that will determine what times they are able to be home and assist? How will my dialysis “timing” affect their life, commitments and obligations, and therefore our relationship?

• What is the capacity for storage in my current living arrangement? More frequent treatments require more supplies. Can I adequately store them, without feeling overwhelmed, or overrun by dialysis supplies? Will they need to be moved mid month (from basement to main floor, etc.)? Am I or do I have someone who is physically able to do this? 

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Research on Caregivers of Children who have had a Kidney Transplant

Research has often neglected the experiences of mothers and caregivers of children who have undergone a kidney transplant. It is not known what changes are made about one’s daily life once a child has undergone a transplant. Andrew Mantulak, Pediatric Nephrology social worker at The Children’s Hospital, London, Ontario, is undertaking a one-year research study examining these experiences.

The study will not only provide an avenue for mothers to share their experiences as caregivers; it will also give renal health professionals an in-depth examination of the lived experience of being a mother of a child who has Andrew Mantulak undergone a kidney transplant. Andrew’s research is supported by an Allied Health Doctoral Fellowship from The Kidney Foundation of Canada. A past recipient of Allied Health Scholarships on two occasions throughout the course of his academic career, Andrew invites affected members of the kidney community to contact him about his study, particularly if they are interested in sharing their experiences. Contact amantula@uwo.ca or 519-433-3491 Ext. 5445.

www.kidney.ca/ontario

ORGAN DONATION

Photo credit: BigStockPhoto.com/3331466

You Came, You Spoke, They Listened

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rom October 2009 to May 2010, Canadian Blood Services travelled nationwide to learn from Canadians about their needs and requirements in a new Organ and Tissue Donation and Transplantation (OTDT) system.

Canadians talked about the values and principles the system should be built on and the top priorities to be addressed. That input has been invaluable in guiding the development of the strategic recommendations.

More than 300 participants took part in the public dialogue series, representing a cross-section of concerned citizens, community leaders, health professionals, donors, recipients, family members and those who simply wanted to help make a difference.

Participants agreed that the OTDT system should incorporate principles of fairness and equality, that it should operate efficiently and always with an eye to patient safety and improved outcomes.

They spoke strongly of the need for increased education of not only the public, but of the medical community, to ensure that every donation opportunity is realized.

System transparency and sustainability also ranked high.

Canadian Blood Services took all of the input you gave and compiled a series of reports: an individual report for each of the nine dialogues, and a final report that captured all the information from across the country and explored common themes and trends that developed across locations.

The reports were provided to the committees working on the design of the new system so that this valuable input could be incorporated. You can read all the reports by visiting www.blood.ca/speakup.

Thank you to all participants for their commitment, contributions and passion! 

Speak up!

Visit www.blood.ca/speakup to: • • •

read public dialogue reports share your transplant story online download a free Kitchen Table Conversation Kit to convene a discussion with family and friends

In the meantime, please continue spreading the word about our activities, and about organ and tissue donation and transplantation in Canada! www.kidney.ca/ontario

Reprinted with permission from Canadian Blood Services. Fall issue Organ and Tissue Donation and Transplantation e-newsletter.

Fall 2010 / Kidney Living /

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VOLUNTEERS

Give the Gift of Life Walk Thank you for taking steps to fight kidney disease!

T

his fall, 30 communities held walk events in an effort to raise awareness of kidney health and organ donation. With more than 1,500 participants, this was certainly our largest walk-year to date. Through your collective effort, you raised funds and took steps to help improve the lives of families coping with renal failure.

“We are thrilled that our patients and their families, partners in health care, dialysis staff teams, transplant coordinators and pharmaceutical companies supported this event in such a significant way,” said Anthony Tirone, Senior Manager, Community Campaigns. “I’m thrilled to announce that we have once again met and exceeded our walk goal, raising more than $425,000.”

Walks are a community effort embraced by participants in communities of all sizes.

They provide a unique opportunity for our kidney family to meet and share experiences, to show support for a loved one living with kidney disease and to celebrate the tremendous gift of life offered through organ donation.

Special thanks to the support of our provincial sponsors Amgen, Genzyme, Ortho-Biotech and Crossroads Television System (CTS), and to our numerous community sponsors, volunteers and walkers for your generous contribution to the success of this year’s walk.

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p Blind River – Volunteer Coordinator Bea with fellow volunteers

q Oshawa – Amanda Roberts, Heather S Wayne Sampson

p Belleville – Volunteer Coordinators Katherine Di Donato and Edie Haslauer with group

p Brockville – L to R: Nieves Bonucchi, Volunteer Coordinator Annie François and Myra Glover

We are looking forward to our second year walk. My son was diagnosed two years ago with MPGN; he is in remission today on medication, and doing great, so we walk for him.

We are proud to support, and send our gratitude to everyone else who contributes to the cause. On behalf of our family—especially Nicholas, who makes me proud each day—we thank all of you from the bottom of our hearts! – Lisa Hamilton, Guelph

/ Kidney Living / Fall 2010

www.kidney.ca/ontario

“

atrice Jensen (L)

Sampson and

VOLUNTEERS

I am walking this year to support a good friend who has kidney disease. She has been on the waiting list for a kidney transplant for four years now, and is on dialysis three times a week. Janis has to drive to Thunder Bay from Raith to get dialysis and goes through rigorous testing to be on the waiting list. Through it all she remains in good spirits, is courageous, and takes the time to raise awareness and answer questions about kidney disease. For Janis, I have made time to participate in the Kidney walk. I hope the support I give will help someone in need, even though it seems like I p North Bay - Ontario Branch President Harvey Thomson with top fundraiser Brian McNeil and Volunteer Walk have so little to offer in means of support.

Coordinator Andrew Hopkins – Alice Sasines, Beardmore Celebrating our Walk

”

p Perth - Walk Coordinator Brenda Dube, walker Marina Thompson who received a kidney just three weeks prior to the walk, and Eastern Ontario Chapter Board member Janet Graham t Guelph – L to R: Brian Brown, Carrie Kraus (centre) and Sue Lambden (guest speaker) with canine friend Moose the puppy.

www.kidney.ca/ontario

Champions

Champion (noun); one who fights for another, or for a cause. (New Webster’s Dictionary) A champion as defined by the Webster’s Dictionary is someone who fights for another or for a cause—a title so aptly deserving of the volunteer walk coordinators across the province. Not only did they organize volunteers, work out logistics, registration, prizes—they also championed the cause and successfully raised awareness of kidney disease and organ donation in communities across the province.

These individuals are all fitting of the title champion, and we would like to take the opportunity to introduce them to you. Half of our walks were led by volunteers and we’re proud to acknowledge that their collective efforts raised over $77,000 in support of research, and the promotion of kidney health and organ and tissue donation awareness.

Interested in learning more about organizing a walk in your community?

Give the Gift of Life Walks provide the opportunity to engage new volunteers and provide the forum for supporters to gather, share their stories and personal experiences, meet other families living with kidney disease and raise awareness and show their support in the fight against kidney disease.

If you would like to learn more about the Walks or join our team of Champions and lead a walk in your community, please contact Elisa Hope at 1-800-387-4474, Ext. 4949 or ehope@kidney.on.ca.  Fall 2010 / Kidney Living /

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“

VOLUNTEERS

p Strathroy - Rizwana Ramzanali, Fund Development Officer, Volunteer Walk Coordinator Lisa Calcutt and Fund Development Manager Kim Pritchard t Peterborough - Walk Coordinator Shelley Green (L) with fellow volunteer Lisa Mandziak In addition, the following were Volunteer Walk Coordinators: (no photos available) Cornwall - Greg Smith Iroquois Falls - Marsha Eaton Orillia - Adrien Handler Picton - Kristin McCall and Kim Gagne South Porcupine Marlene Smith

I decided to walk this year to support my very dear friend, Betty Aquino.I have known Betty for many years. She is a great wife and a wonderful loving mother to four boys who all still live at home. She has a full time job but still manages to run a tight ship and look after five men in her household. Suffice it to say, she is one busy woman. I had known about Betty’s condition for a few years, but never quite realized the scope of it until one particular evening. She had invited me for dinner. During dinner we spoke about her dialysis treatments and she asked if I wanted to see her bedroom and see what goes on in there.

Well—I was astonished. Her bedroom was like walking into a hospital. Huge machinery, tubes, wires, needles, etc. She proceeded to show me her routine, including all the little details, one by one, hours upon hours, three times a week, for the rest of her life! Having this treatment at home has enabled her to live as normal a life as possible.

Hopefully with more money and research, someday soon my dear friend Betty and others like her can live normal lives.That is why I walk and that is why I will continue, for Betty’s cause.

– Mario Marinelli, Woodbridge

t Pembroke – Prize winner Martha Heideman and Walk Coordinator Kim Wagner u Sudbury – Heather Tarnopolsky (far R, waving)

Online photo galleries from many of the walks are now posted on the community walk web pages.

Visit www.Kidney.ca/ontariowalk and click on your community name to get started.

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”

www.kidney.ca/ontario

WORKING TOGETHER

On Call Honouring a Hamilton nephrologist who truly put his patients first.

by Mary Baxter

I

n 2008, Dr. Brian Steele ended what might well be the longest on-call shift that a doctor in his region has ever made. When he arrived at Hamilton’s McMaster University Medical Centre in 1982, Dr. Steele made himself available to his young patients day and night, seven days a week, even though for the first 20 years he was the hospital’s sole pediatric nephrologist.

He also established McMaster’s referral centre for children’s kidney disease, introduced children’s dialysis there and participated in community educational programs.

So when the co-chairs of the Hamilton and District chapter’s Kidney Foundation Impressions award put their heads together to determine the recipients under the categories of leader, caregiver, pioneer and innovator, it’s not surprising that Dr. Steele’s name came up—for every category. It’s the first year the award, which celebrates the people who take action in different communities, has been presented in Hamilton.

The presentation takes place December 1, 2010 at Liuna Station in Hamilton.

Ask him about his extraordinary dedication to his patients and the lad, originally from Northern Ireland, mildly replies that he didn’t know any better—that is until 2003, when for the first time there was enough money in the hospital budget to hire another doctor.

Kidding aside, Dr. Steele explains that his availability provided patients with muchneeded consistency of care. “Chronic kidney disease is a very emotional thing,” he explains. “If your child is on dialysis, then you really need lots of support from the medical community.” The program’s nurses were key, he adds, recalling one in particular who had specialized in dialysis and who knew the subject so well that “she was able to help me a heck of a lot and deputize for me during vacations.”

Dr. Steele says the biggest change during his career was the increasing use of ultrasound. This technology makes it possible to detect congenital kidney disorders in utero. Early detection has meant that parents can be prepared for what to expect before delivery. Mostly “it was a relatively minor kidney abnormality, but with an early diagnosis we were then in a position to prevent the baby from getting sick at a later time from infection or blockage to the kidneys.”

Today Dr. Steele, 65, practices part-time. In between, he travels, gardens, reads and does some carpentry. It now feels good to spend weekends without a pager on his belt, he says. But being on call was never all that bad. Being responsible for your patients is fundamental and he admits that he gleaned plenty of satisfaction. “I took the job seriously. I was expected to be the kidney doctor and I said, ‘Okay, if I’m the kidney doctor and I’m getting paid to be the kidney doctor, I have to do it the right way.’”  www.kidney.ca/ontario

Dr. Brian Steele

Impressions An evening to honour Dr. Brian Steele December 1, 2010 at 6:30 p.m.

Liuna Station, Hamilton Tickets $75 each Order online at www.kidney.ca/ontarioevents or by calling 1-800-387-4474, Ext.4962

Fall 2010 / Kidney Living /

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LIVING WELL

Vitamin B – A Word of Caution

A Kidney Foundation funded study finds that Vitamin B may be harmful for kidney patients with diabetes

I

n a study published in the Journal of the American Medical Association (JAMA)

by Dr. Andrew House of the University of Western Ontario, patients with diabetic nephropathy taking high doses of Vitamin B showed a decrease in kidney function and were at increased risk for heart attacks and stroke.

Patients with diabetes normally have higher homocysteine (an amino acid that increases clotting of the blood) levels and often take Vitamin B supplements, which seem to lower homocysteine levels. Studies have shown that too much homocysteine in the blood is related to higher risk of coronary heart disease, stroke and peripheral vascular disease.

Dr. House and colleagues think that because Vitamin B is water soluble, healthy people would excrete excess Vitamin B in the urine. However individuals with reduced renal function would not be able to do so, perhaps causing the adverse affects seen in this study.

“This is an extremely important study,” says Paul Shay, National Executive Director of The Kidney Foundation of Canada. “People with kidney disease often take vitamins assuming they must be safe and good for their health. People with kidney disease should talk to their doctor before taking over-the-counter supplements.” 

Donate by Text We now have a new, convenient way for you to help support The Kidney Foundation of Canada.

With a simple text message, you can make a $10 donation to The Kidney Foundation. Simply text the word “KIDNEY” to 45678. Each $10 donation will be added to your next mobile phone bill.* You can donate up to $30 per month.

2 Simple Steps 1. Text “KIDNEY” to 45678 to donate $10.

2. Confirm your donation by replying YES. *A one-time donation of $10 will be added to your mobile phone bill or deducted from your prepaid balance. All charges are billed by and payable to your mobile service provider. Service is available on most carriers. Donations are collected for the benefit of The Kidney Foundation of Canada by the Mobile Giving Foundation and subject to the terms found at www. mobilegiving.ca. To unsubscribe, text STOP to 45678, for help text HELP to 45678.

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www.kidney.ca/ontario

EAT TO LIVE

Reprinted with permission from: Spice it up! Fall/Winter 2009. ISSN 1918-302 X Spice it up!Š 2010 Communication ebmed Inc. All rights reserved. www.ebmed.ca. For more recipes, visit: www.myspiceitup.ca

www.kidney.ca/ontario

Fall 2010 / Kidney Living /

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LIVING WELL

Exercise Photo credit: BigStockPhoto.com/594101

A key to lowering risks of heart disease in patients with chronic kidney disease.

H Make exercise a part of your day

• Walk for 10-15 minutes during lunch break/after dinner.

• Get off the bus one stop early so you can walk the rest of the way to your destination.

• Park your car a few blocks away or at the far end of the parking lot so you can have a short walk.

• Think of housework as a chance to exercise. Vacuuming briskly can be a real workout.

You should not do exercise when any of the following occurs: • You have a fever or infection.

• You feel dizzy or faint.

• You feel short of breath.

• You changed your dialysis schedule.

• You changed your medicine schedule or dosage.

• Your physical condition has changed.

• You have eaten too much or not enough.

• You have severe anemia or fatigue.

• The weather is hot and humid.

• You have a joint or bone problems that become worse with exercise. If you have a specific pain (i.e., sore knee, you should mention this to your doctor/and or physiotherapist to have the problem addressed).

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eart disease is closely connected with kidney failure, and cardiovascular complications may develop at any stage of kidney disease. In fact, people who suffer from kidney failure are at a greater risk to die from heart problems. By improving your life habits, you can also improve your heart’s health.

Major risk factors for heart disease in chronic kidney patients may be modifiable (those things we can control or change) and non-modifiable (things we cannot change, such as our age, gender and heredity).

Modifiable risk factors include smoking, cholesterol, diabetes, high blood pressure, physical inactivity and being overweight. You can lower the risk of heart disease by quitting smoking, lowering your cholesterol, controlling blood pressure and blood sugar and exercise to lose or maintain a healthy body weight.

Exercising provides many protective effects on the heart, and has many benefits for the overall health of patients with CKD. Studies show that one in three people are at risk of having a heart attack because they fail to do enough exercise. Physical inactivity is just as big a risk factor for heart disease as high blood pressure and smoking.

Kidney patients are encouraged to take part in some kind of physical activity. Exercise helps to increase the red blood cell count in kidney patients, and thus helps to increase strength and energy levels. Speak to your medical team about how you can better incorporate exercise into your life.

How to start a successful exercise program 1. First and foremost, talk to your doctor. It is important to consult your healthcare professional before starting any exercise program or increasing your physical activity. Your doctor may recommend specific kinds of exercise to best meet your own individual needs.

2. Choose an activity that you like and can see yourself doing long term. If you make exercise part of your daily routine, you will be more likely to continue regularly.

3. Start at a slow pace and gradually increase the pace and amount of time as you become fit. Begin each session with a five-minute warm-up followed by stretching and a cool-down such as slow walking.

4. Plan your exercise around your most active part of the day. If you are a morning person, schedule your exercise early in the day.

5. Listen to music or watch TV while you exercise to keep yourself entertained.

6. Encourage your family to exercise with you. Involve your children in your active lifestyle.

7. Set realistic exercise goals. Reward yourself when you achieve these goals.

8. Maximize your safety and comfort. Exercise in a safe location. Wear comfortable and appropriate shoes and clothing.

9. Be gentle with yourself and have fun. You don’t have to finish first—it’s the long run that counts. The important point is to show up to the startling line and do the best you can. 

Thanks to the BC Branch of The Kidney Foundation of Canada for providing the information for this article. www.kidney.ca/ontario

FUNDRAISING

A Gift that Keeps on Giving Make The Kidney Foundation of Canada part of your next celebration.

A

re there wedding bells in your future? Perhaps a special birthday or anniversary is on the horizon. The Kidney Foundation of Canada is here to help you make your celebration a success while bringing new hope to people touched by kidney disease.

My Celebration is a response to the growing number of celebration donations and provides donors with customized and branded favours to present to their guests for their celebration.

“Our supporters are truly remarkable. They volunteer, they organize events and many of them now choose to include the Foundation in their celebrations,” said Erika Muscat, Publicity and Events Coordinator. “As we began responding to these numerous requests, the concept of My Celebration was born.”

Donors who wish to include The Foundation in their celebration will be provided with an elegant and professionally made card to provide to their guests, letting them know that a donation was made in lieu of gifts or favours. The notification cards are available in a variety of styles including a keepsake bookmark, a place setting tent card or a larger tent card that sits in the centre of the table.

No more fiddling with wrapping hundreds of small trinkets or trying to think of something unique that all of your guests have never received before. A contribution to The Kidney Foundation of Canada is a time saver, and allows you to contribute financially to support leading kidney research and programs and services that strive to meet the needs of patients and families affected by kidney disease. It is a gift that is appreciated by your guests and those living with the disease.

“These are a wonderful way to memorialize or honour someone you love who has kidney disease, or who has given or received the gift of life,” added Erika.

The process is simple. Visit www.kidney.ca/mycelebration. Submit your request online and a Kidney Foundation representative will be in touch with you to verify the details of your request. A professional design proof will be generated and sent to you for approval.

Once approved, allow three to four weeks for delivery to your nearest Kidney Foundation office or by mail.

The biggest decision you will have to make is what kind of font and wording you will choose. Then leave the rest up to us! We look forward to assisting you in making your celebration a special one.

Are you being honoured at a celebration?

If you are the guest of honour at a celebration but do not want to receive gifts from your guests, consider asking them to donate to The Kidney Foundation of Canada in lieu of giving you a gift. Contact your local Kidney Foundation office and we can provide you with cards and envelopes to help facilitate this request. 

www.kidney.ca/ontario

Fall 2010 / Kidney Living /

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BUILDING A FOUNDATION

O

n Wednesday, November 24, The Kidney Foundation of Canada’s Eastern Ontario Chapter held its inaugural Inspirations – People Making A Difference dinner, emceed by Bob Derro. This fundraising dinner, held in the Grand Hall at the Canadian Museum of Civilization in Gatineau, honoured three outstanding individuals who have made, and continue to make, significant contributions in the field of organ and tissue donation.

The three honorees are: Dr. John Dossetor, OC, BM, BCh, PHD, FRCPC – Co-Founder of The Kidney Foundation of Canada, Dr. John Dossetor is one of Canada’s first nephrologists. Among the many credits to his distinguished career, Dr. Dossetor coordinated the first renal transplant in the Commonwealth.

Rabbi Dr. Reuven Bulka – As a dedicated community leader, Rabbi Bulka is involved in assisting a number of charities. For 15 years Rabbi Bulka sat as Chair of the Foundation’s Eastern Ontario Chapter’s Organ and Tissue Donation Awareness Committee.

Rabbi Bulka continues his work of raising awareness of the importance of organ and tissue donation through his position as Chair of the Trillium Gift of Life Network.

Diane Dumont, RN, BScN, CNeph(C) has devoted more than 20 years of her career to renal transplantation. She is the Regional Renal Transplant Recipient Coordinator at the Riverside Campus of the Ottawa Hospital. She is the link between renal professionals and transplant recipients and potential transplant recipients in Eastern Ontario. She is integral to the functioning of the Ottawa Hospital Renal Transplantation Program.

Dr. John Dossetor

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Rabbi Reuven Bulka

Diane Dumont www.kidney.ca/ontario

WORKING TOGETHER

What’s for Lunch?

Two women turn a challenge into a spirit of solidarity

by Stacey Scott

“It’s a cause close to our hearts.”

www.kidney.ca/ontario

F

or many, being diagnosed with kidney disease can be a daunting experience. A kidney patient not only encounters physical challenges, but can come against some huge emotional hurdles too. Even though patients may have a strong support system in place, some may find it difficult to find someone who truly understands what it is like to live with kidney disease. That is where long-time Kidney Foundation volunteers Wendy Agar and Mary-Jane Pearson of Fort Frances, Ontario come in. For over 20 years both women have given their time, shared their experiences, and most recently, opened their doors to kidney disease patients by hosting regular luncheons.

“It’s a cause close to our hearts,” says Mary-Jane, referring to the fact that both she and her close friend Wendy have children affected by kidney disease.

The idea of hosting a lunch stemmed from Wendy and Mary-Jane wanting to provide support to kidney disease patients in their Northern community as well as maintaining The Kidney Foundation’s profile. They went to their local renal unit at the Riverside General Hospital and spoke to the nurses about the luncheon idea. With the renal unit’s support in helping to get the word out to patients, the luncheon took off.

“The lunches are a social gathering to get people out of the hospital setting,” says Mary-Jane.

The luncheons, which bring together several women in the community from a variety of backgrounds, are hosted at Mary Jane’s scenic house on the water. The menu factors in diet restrictions and the cooking and preparation is divided among the members of the group. They use the occasion to chat about their lives, work, families and the topic that originally brought this diverse group together—their experiences of living with kidney disease. Together, they’ve established a network of support in the community and help each other by lending an ear when needed and assisting the Foundation in raising its profile through fundraising endeavours and hospital visits.

“It’s a way to lend support to others,” says Mary-Jane, “and that’s what it’s all about.”  Fall 2010 / Kidney Living /

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COMMUNITY HIGHLIGHTS

Community Highlights Providing a Voice for The Kidney Foundation of Canada t The Kidney Foundation of Canada held an orientation session in September to help prepare a new group of Kidney Foundation volunteers for their new roles on the Ontario Renal Network – Regional Renal Program Steering Committee (RRPSC). The session provided historical background of the Foundation’s advocacy efforts, pressing issues and current priorities. The volunteers are equipped to represent The Kidney Foundation of Canada and the needs of people living with kidney disease across the province. This key group of volunteers will help keep the RRPSC informed of the latest Kidney Foundation issues and initiatives and provide a patient voice to these important committees. Special thanks to guest speaker Treva McCumber from the Ontario Renal Network and to Baxter for their financial support of this orientation session.

Volunteers Maureen Connelly and Suzanne Jeffrey network at the orientation session.

Nephrology Roundtable u As an outcome of the Inspirations event in London, sponsors were invited to participate in a Nephrology Roundtable with local renal professionals and Kidney Foundation volunteer leaders including Dr. William Clark, Dr. Peter Blake, Dr. Amit Garg, Dr. Bob Lindsay, Dr. Louise Moist and Dr. Faisal Rehman. This innovative concept resulted in a valuable exchange of ideas and updates with representatives from Leo Pharma, Astellas, Baxter and JanssenOrtho. With topics ranging from the Ontario Renal Network to transplantation to The Kidney Foundation’s history of solid investment in research and the KRESCENT program, the session provided a backdrop for knowledge sharing and good communication with stakeholders, in this case, industry and KFOC sponsors.

Pictured: Dr. Louise Moist and Dr. William Clark

Ontario March Drive Champion p Mary Anne Shanahan was recognized as an Ontario March Drive Champion by the Foundation’s national office. Mary Anne has been a March Drive volunteer for 15 years. She is both a canvasser and team captain for multiple zones in the city of Niagara Falls.

Photo: Janet Borland and Mary Anne Shanahan

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www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

Celebrating the Sarnia – Lambton Chapter’s 25th Anniversary t On Sunday, September 26, the SarniaLambton Chapter celebrated its 25th Anniversary, hosted by committee chair and founding president, Greg Robbins.

Approximately 90 people toured the brand new dialysis unit at Bluewater Health in the afternoon. Dinner followed at the Quality Inn with guest speaker Dr. Joaquin (Quim) Madrenas from The Robarts Centre, University of Western Ontario (London). Most past presidents of the chapter were in attendance and hosted a table at the event. The evening continued with 25th Anniversary awards being presented to many deserving recipients including Franco Filia, Co-operators, Bluewater Health Dialysis Unit, Sarnia Golf & Curling Club Pro Am Committee, The Sarnia Van Drivers, Edward Machura, Joan Kuchta, Mahesh Juthani, Dorothy Percival, Tim Phillips and Laurie McCann

Top: Touring the new dialysis unit at Blue Water are L to R: Dean Fraser, Hugh Sutherland, Mary Sutherland, Lisa Fraser and Cathy McCrie Bottom: Taken at the presentation of the Community Partner Award to Bluewater Health Dialysis Unit: Marg Jones, Sue Irwin, Joan MacLeod, Nora Gibson, Cathy McCrie, Elaine Hayter, Laurie Colbran and Murray Sutherland

The Kerlow Klassic u In June, the Kerlow family held a golf tournament in order to share their appreciation and support for the work of The Kidney Foundation. Their event raised an incredible $12,400. Jeffrey received a kidney from his father, Thomas, three years ago and he is tremendously grateful for his new lease on life, thanks to this special gift.

L to R: Elisa Hope, Susan Storey, Jeffrey Kerlow, Johann Kerlow, Thomas Kerlow.

www.kidney.ca/ontario

Fall 2010 / Kidney Living /

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COMMUNITY HIGHLIGHTS

Reaching Out to Spread a Message of Kidney Health u On August 11, 2010 at Beausoleil First Nation on Christian Island, volunteer Mary Smith and Jennifer Francis, Program Coordinator with The Kidney Foundation of Canada, shared teachings about organ donation and kidney wellness with Beausoleil residents. Mary, a Nurse Practitioner who donated a kidney to her son earlier this year, is keen to raise awareness of kidney health and organ donation. Mary is also representing the Foundation on the Muskoka Regional Renal Program Steering Committee for the Ontario Renal Network.

Many thanks to Mary Smith, Jenafer Smith, Irene Monague and all those who participated in a wonderful day.

L to R: Mary Smith and Jennifer Francis

Celebrity Men’s Fashion Show t Celebrity Men in Fashion Event Between the parties, the shows, the networking—oh yeah—and the work of the most seasoned fashionista David E. White, the Celebrity Men in Fashion event was once again a tremendous success. With a refreshing new take on men’s fashion, the event held at the London Hunt and Country club raised over $49,000—a significant increase over last year.

Who were these celebrity men, you ask?

Thanks to Frank Longo, Gordon MacKenzie, Jeff McArthur, Bob Siskind, Lindsay Elwood, Perry Jeffrey, Paul Cocker, Tony Dagnone, Mark Davenport, Jonathon Bancroft-Snell, Don Bryant, James Caskey.

Behind the scenes, Dr. William Clark and his wife Lorie Forwell, along with an enthusiastic volunteer committee, pulled together the creative production and handpicked the celebrity models. Thank you to Leo Pharma, Amgen, Genzyme, Pacific & Western Bank and Mikalachki Investment Management for the strong corporate sponsorship.

Get Kidney Living via email

Frank Longo, President of Longo Food Service Equipment, entertains the audience.

Special thanks to Sandbox & Lulupops Lifestyle Photography for their support.

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.

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www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

Join our growing Facebook Community 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.

December 1 5

Impressions, Hamilton Annual Patient and Family Christmas Party, Windsor 7 Kidney Connect Support Group Meeting, Thunder Bay 8 Kidney Connect Support Group Meeting, Kitchener 15 Lakeridge Health Patient & Peer Support Coffee Club

January

12 Kidney Connect Support Group Meeting, Thunder Bay 18 Kidney Connect Support Group Meeting, Kitchener 19 Lakeridge Health Patient & Peer Support Coffee Club, Oshawa

In just one year, our Facebook community has grown from 300 Fans to nearly 4,000 today.

Join us on Facebook today and be part of this growing community. Together we can make a real dierence in the lives of those living with kidney disease.

facebook.com/kidneyfoundation

You are the key to our success.

Find out how you can volunteer or donate.



www.kidney.ca/ontario

Discover why some of the richest people in the world are not millionaires, they are volunteers. www.kidney.ca/ontario

Fall 2010 / Kidney Living /

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Register online at www.kidney.ca/ontariowalk Disponible en franรงais

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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