Kidney Living Fall 2011

KIDNEYFall 2011Volume 4 • Number 3

livingwww.kidney.ca/ontario

A PUBLICATION OF THE ONTARIO BRANCH

From camping to cooking to a wedding in Scotland . . .

Renal Professionals go above and beyond

2 / Kidney Living / Fall 2011 www.kidney.ca/ontario

Canadian Publications Mail Agreement #40011479Return Undeliverable Canadian Addresses to: Trish Reynolds, Communications Man-ager, Circulation Department, 1599 Huron-tario St., Suite 201, Mississauga, ON L5G 4S1; email:[email protected]. Phone:1-800-387-4474.

www.kidney.ca/ontario

ExecutiveHarvey Thomson, PresidentTerry Young, Vice PresidentPeter Davis, Past President

Debbie Lanktree, TreasurerDirectors at Large

Dr. Ann BugejaCraig Kerr

Janet MorganKen Mylrea

Doug ParsonsBrian Porter

Greg RobbinsMarlene Smith

Mary SmithMicol Zarb

Executive DirectorJim O’Brien

Ontario Branch1599 Hurontario St. Suite 201

Mississauga, ON L5G 4S11-800-387-4474905-278-3003

What’s in this issue – Fall 2011

3 Cardio-Renal Health

5 Something Borrowed, Something Blue

8 Volunteer Think Tank

9 Bon Appétit!

10 The Spirit of the Walk

12 Dr. Norman Rosenblum

14 Dance . . . Interrupted

16 Kids Transplant Camp 2011

17 Community Highlights

The Kidney Foundation of Canada, Ontario Branch 2011-2012

Board of Directors

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©2011. 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 per-mission, is strictly prohibited. For more information, please contact Trish Reyn-olds, Editor at [email protected] or 1-800-387-4474 Ext. 4981.

Ontario Branch1599 Hurontario St. Suite 201

Mississauga, ON L5G 4S11-800-387-4474/905-278-3003

[email protected]

COMMUNITY CONTACTSCentral Ontario

1599 Hurontario St. Suite 201Mississauga, ON L5G 4S1

1-800-387-4474/[email protected]

Chinese Renal Association1-800-387-4474 Ext. 4977

[email protected] Ontario

401 - 1376 Bank St., Ottawa K1H 7Y3613-724-9953/1-800-724-9953

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Kingston, ON K7L 2V6613-542-2121

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North Bay 705-476-3715

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Thunder Bay, ON P7B 5V5807-624-2680

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519-344-3462 [email protected]

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Sault Ste. Marie, ON P6A 2A1705-949-0400

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379 Dundas St., Suite 119London, ON N6B 1V5


Timmins-Porcupine 11357 Hwy. 101 E.

Connaught, ON P0N 1A0705-235-3233

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Western Ontario (Kitchener/Waterloo) 379 Dundas St., Suite 119

London, ON N6B 1V51-800-667-3597

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Cover photo: Nurse, Sarah Reid (née Milligan) organized two events this fall—The Give the Gift of Life Walk in Orillia and her wedding in Loch Lomond, Scotland. See story on page 5.Photo credit: Ian Arthur

6 A Need to Make a Difference

14 An All-Inclusive Resort

Fall 2011 / Kidney Living / 3www.kidney.ca/ontario

MEDICAL RESEARCH

Cardio-Renal HealthLinking a better understanding of the relationship between Kidney Health and Cardiovascular Disease

In Canada, someone dies from heart disease or stroke every seven minutes.* This reality does not escape those with underlying kidney disease; in fact, they are considered at higher risk than the general population. However, preservation of

renal function through risk factor modifications as well as treatment of cholesterol has been shown to reduce important cardiovascular events, namely heart attacks. By understanding and considering the link between chronic kidney disease and cardio-vascular outcomes, we can potentially tackle both issues simultaneously. Treatment of either disease is not mutually exclusive as the two entities are linked more closely than previously appreciated.

Traditional cardiac risk factors, as first introduced by the large Framingham population study, include diabetes, high blood pressure, smoking, high cholesterol, and family history of heart disease. The importance of these factors has been highly publicized over the years with great interest and acceptance by both physicians and patients alike. Modifications of each component, other than family history, have been shown to reduce important cardiovascular events such as heart attacks and strokes.

It has long been recognized that end-stage renal disease is associated with increased risk of coronary heart disease. Over the last several years, there is an overwhelming body of evidence to suggest that mild to moderate renal dysfunction is also associated with a substantial increase in the risk of developing heart disease. This has prompted major societal organizations to view chronic kidney disease as an independent risk factor for the development of coronary heart disease. In fact, the risk of death from cardiovascular disease in kidney patients is higher than the risk of progressive renal disease requiring end state renal replacement. Therefore a renal patient is more likely to suffer from a heart attack and progressive loss of cardiac pump function, commonly referred to as heart failure, than to require dialysis. It has been shown that those with chronic kidney disease are up to 3.5 times more likely to suffer a fatal cardiovascular event compared to those without chronic kidney disease. Especially in the case of dialysis patients, cardiovascular disease accounts for over 50 percent of deaths, which far outweighs any other known cause.

Why does this occur? A likely explanation would be the observation that kidney disease accelerates the rate of cardiovascular disease. We know that people with kid-ney disease possess more underlying traditional risk factors for heart disease than the general population. This is especially the case in the chronic kidney disease patients who have metabolic syndrome, which is the combination of insulin resistance, high cholesterol, high blood sugar, abdominal obesity, and high blood pressure. It appears that the more cardiovascular risk factors you have, the more severe the kidney disease and vice versa.

In addition to the traditional risk factors mentioned above, there are mechanisms unique to those with kidney disease that confer additional risks for heart disease. As kidney function decreases, the kidneys’ ability to filter and detoxify the blood dete-riorates. This results in a rise in toxic metabolites. The uremic toxins in combination with the common complications associated with chronic kidney disease, metabolic derangements and the excess toxicities from conventional kidney disease therapies, all have a negative impact on the heart through accelerated coronary atherosclerosis.

With all this in mind, what can a person with chronic kidney disease do to prevent a heart attack? First and foremost, the focus needs to be on preserving current kidney

by Rudy Chow, MD (UBC cardiology fellow) and Andrew Igneschewski, Head of Division of Cardiology, Medical Director Heart Failure and Healthy Heart, St. Paul’s Hospital

*To view the scholarly references that helped inform this article, please visit www.kidney.ca/bc/livingwellfootnotes.

Reprinted with permission from the Living Well for Kidney Health newsletter, March 2011.


MEDICAL RESEARCH

health and function. Tight control of blood pressure has been shown to reduce the progress of kidney dysfunction. The optimum targets are less than 140/90 or, for those with proteinuria or diabetes, less than 130/80. Other strategies involve smoking cessa-tion, maintaining an ideal body weight and an active lifestyle. Another major component is rigorous glycemic control in diabetic patients. The preservation of kidney function is important because recent large studies have shown that the presence of both decreased renal function and increased proteinuria enhance the risk of cardiovascular disease. As your renal function or proteinuria worsens, your risk of cardiovascular mortality increases in an exponential fashion.

A new development in the arena of kidney and cardiovascular disease is the issue regarding the lowering of cholesterol levels with statin therapy. Prior studies have produced mixed results with no clear evidence to suggest that cholesterol lowering medications can improve cardiovascular outcomes in those with chronic kidney disease. This left both nephrologists and cardiologists in a state of confusion. Then the question remained, how are we to counteract or alleviate the increasing prevalence of heart disease in patients with chronic kidney disease? The results from the SHARP trial that emerged early this year may shed some light into this debate. In a study with dialysis and predialysis patients, investigators showed that those given a combination pill of simvastatin and ezetimibe experienced a 17 percent reduction in major atherosclerotic events compared with the placebo group. This trial with local ties may help change the way we approach and manage these individuals at high risk for cardiovascular disease.

Through increased awareness of the important link between kidney disease and cardiovascular disease, both nephrologists and cardiologists can work together to insti-tute tangible changes in the management of chronic kidney disease. The collaborative effort will undoubtedly produce a positive impact on freedom from cardiovascular events as well as quality of life in individuals with kidney disease.

Passion + Action + Impact

= Volunteers

Nominations forms available online www.kidney.ca/on/volunteer-awards

or call 1.800.387.4474 ext.4972

Deadline February 1, 2012

Is there an outstanding Kidney Foundation volunteer in your community? Celebrate their accomplishments by nominating them for a volunteer award.


COVER STORY

Your Story is Worth SharingHow 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!

[email protected]

We are eager to read about you!

Something Borrowed, Something BlueSarah Reid (née Milligan) had two big days to count down to this fall—her fairytale wedding in Scotland and the Give the Gift of Life Walk in Orillia.

by Stacey Scott

As a full-time dialysis nurse at Orillia’s Soldiers’ Memorial Hospital (OSMH), Sarah Reid is no stranger to the difficulty kidney patients often face.

“I have seen the struggles people go through with kidney disease,” says Reid. “You build such good relationships with these people. You see them three times a week and they become a mini family.”

Sarah has been a renal nurse for eight years and has served the Orillia community since 2008. When she was approached to coordinate her local walk, she eagerly took on the challenge of bringing awareness of kidney failure despite the fact of her im-pending wedding overseas.

“I don’t think I thought about the two of them together,” says Sarah when asked about simultaneously planning her wedding and the walk. “If it wasn’t for my Mum I don’t think it (the wedding) would go ahead.”

So how does a renal nurse from Scotland land in Ontario? According to Sarah, she fell in love with the country over the course of several family vacations and would often contemplate a move.

“I said to my Mum that I think I would quite like to live in Canada,” recalls Sarah. So in 2008 she packed up all of her belongings, said goodbye to her friends, family

and patients and made the big leap across the pond to Canada. With several years of renal nursing behind her, she quickly secured a job with the dialysis unit at the OSMH and started to make a life for herself in her new country. In 2009 she met Chris Reid, and by 2010 she was engaged and planning her fairytale wedding.

“If he was going to support me for the rest of our lives, it starts with The Kidney Foundation walk,” says Sarah, who admits to sneaking pledge sheets in her husband’s lunch.

Thanks to Sarah’s leadership and drive, the Orillia walk nearly doubled its $3,500 goal and collectively raised $6,429 for research, patient education and support.

“You have to believe in the cause you are working towards,” says Sarah of her suc-cess. “People should just take a moment and be proud of what they have achieved as one person, and proud of what they achieved as a group.”

Sarah and Chris were married on October 14, 2011 in her hometown of Lochlomond, Scotland. The newlyweds will also have a special ceremony in Canada in the New Year.

“You have to believe in the cause you are

working towards”

Sarah and Chris Reid on their wedding day. Sarah with her Walk bag is superimposed on this image.


RENAL PROFESSIONALS

A Need to Make a DifferenceWhen Valerie Cronin thinks about kidney research, she gets excited and inspired.

by Trish Reynolds

“I am really passionate about research. I truly care about the patients that are a part of our research studies – I don’t see them as a number, they are people that are taking time out of their busy lives to make a difference and help expand

our learning to better treat kidney disease,” said Valerie. Working in the kidney research field since 2005, Valerie continues to be inspired

each day by the patients and nephrology team she works with at The Ottawa Hospital. “They are all 100 percent dedicated to what they do, which in turn keeps me invigorated and enthusiastic about the research taking place.” Valerie is a Clinical Nurse Research Coordinator and works on a number of clinical research projects that are helping to develop new strategies to improve the treatment of kidney disease.

One of the studies Valerie currently works on is investigating post-transplant drug interventions to ensure that transplanted kidneys function as long as possible. Clini-cal studies such as the one Valerie works on are frequently funded by the Canadian Institutes of Health Research and rely on the voluntary participation of many patients.


RENAL PROFESSIONALS

Stay ConnectedDid you know you can now receive Kidney Living by email? You’ll re-ceive the same great content as the print version and you’ll get it a few days earlier. Receiving this newslet-ter electronically also assures the Foundation can keep costs low by decreasing printing and postage expenses. To change your subscrip-tion to an email version, simply send your name, current mailing address, telephone number and email address to [email protected]. Please put “Change Kidney Living Subscription” in the subject line.

Research is the beginning of all ad-vances, and is the foundation for new discoveries and new treatment options. “The research we work on depends on the support of hundreds of patients. It is through their time and effort to par-ticipate that we are taking new strides to lay the foundation for longer lasting transplants and preventive treatments,” said Cronin. “I would encourage people to keep an open mind if they are ever invited to participate in a research study. Ask a lot of questions to learn more, but absolutely never feel obligated to participate.”

This summer Valerie began her fund-raising effort for The Kidney Foundation’s Give the Gift of Life Walk. “I really just wanted to make a difference,” said Cronin.

Valerie’s fundraising took some innova-tive twists and turns this year. “I have seen the struggles and challenges our patients face,” says Cronin, “and it inspired my competitive edge to raise as much money as I could for my team, The Ottawa Hos-pital Nephrons. I set up a display at a local Walmart, and another day was spent outside a store in Orleans with my educational display and a model of two diseased kidneys, and a healthy transplanted kidney.” The exercise was eye-opening. “People were keen to learn more and were quite surprised to learn that a transplanted kidney isn’t placed in the same place as the diseased kidney.” The donations were a great addition to Valerie’s fundraising effort, but educating the public was an added bonus.

Knowing that funds raised from the walk support kidney research makes Valerie feel great. “I tell patients that research is the foundation and without research in the past, we wouldn’t have the types of medications and treatment options [that we have] to treat kidney failure,” said Cronin. “One of the studies I’m working on is an eight-year study. Over the years you really get to know each individual and their families and it’s easy to want to make their lives better.”

Valerie participated in the Give the Gift of Life Walk as part of the Ottawa Hospital Nephrons team.

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BUILDING A FOUNDATION

Volunteer Think TankGovernment Relations, Reginal Renal Reps hold joint discussion on key priorities

Now that the provincial election is over, work gears up for The Kidney Foundation of Canada’s Ontario Government Relations Committee (ORGC) to renew its strategy to the end of 2012.

More than a year ago, the committee took leadership for ensuring that volunteers were recruited and trained for placement on Regional Renal Program Steering Com-mittees (RRSPC). These representatives are members of the RRPSCs in all 14 Local Health Integration Networks across the province.

Their place at the table ensures that the Foundation is a voice for patients at the planning stages of kidney care and links the Foundation to the work of the Ontario Renal Network.

These two groups of dynamic volunteers held a joint planning session in October to talk about key objectives for their collective voices.

Some of the recurrent themes which emerged from both the government relations and RRSPC volunteers focused on transportation access for ambulatory patients; travel health grants for patients in rural and remote communities; other personal costs for dialysis including water, garbage and hydro; the link between care of pre-dialysis and dialysis patients and transplant patients/donors.

As part of its efforts to ensure that kidney health remains top of mind for Members of Provincial Parliament, the ORGC is finalizing its post-election strategy. This will in-clude building relationships with all ministers and opposition critics related to health and any other portfolio impacting on the key conversation points.

Just as they were during the election, three key messages will remain at the forefront of The Kidney Foundation’s call for improvement:• AddressingtheHiddenCostsofKidneyDisease• PreventingtheNeedforDialysisandTransplantation• SupportingtheOntarioRenalNetwork

For more information on the issues, visit www.kidney.ca/on/election and read the election readiness document, Reducing the Burden of Kidney Disease in Ontario.

by Wendy Kudeba

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LIVING WELL

Connect with someone who understands

1 866 390 PEER (7337)

If you or someone close to you has kidney disease, sometimes it helps to talk about it. The KIDNEY CONNECT Peer Support Program puts you in touch with other people who are affected by the disease. They’ll share their own experience with treatment, lifestyle, family and work issues. And they can answer many of your questions because they’ve been their too.

“We were completely blind-sided by the diagnosis and I had so many

questions. You can read text books and manuals but there is a time

when you need to talk to someone, someone who understands.”

Kidney Connect Program Participant

www.kidney.ca

There are a lot of different foods that people who live with kidney disease must give up. Fruits. Vegetables. Whole wheat bread. The diet defies much of what we are taught to consider healthy food choices.

No one knows this better than June Martin, a clinical dietitian with the Grand River Hospital in Kitchener’s renal program. For 10 years now, June has helped patients adjust to their limited diet and improve their quality of life.

June credits a conference on kidney disease eight years ago for strengthening her resolve to help. There, she learned that diet was a main factor that patients identified as negatively affecting their quality of life. She was devastated. So when she returned to work she partnered with a chef to create cooking demonstrations for patients. “It was such a refreshing change to start focusing on what our patients could have,” she says. “That really got me motivated again.”

Since then she has worked with others to develop a cookbook series for chronic kidney disease patients called Spice It Up! as well as education materials for The Kidney Foundation’s national program. She is currently working with a group of dietitians from across Canada to create an extensive section for the Foundation’s website that will feature a recipe database, meal planner and nutrition information. She also blogs about eating renal friendly on The Kidney Foundation’s website.

Earlier this year, June’s remarkable efforts and dedication to The Kidney Founda-tion Patient Services programs earned her the Mary Lou Karley Patient Services Award.

Today, June believes that attitudes about the diet are more positive. But there are other challenges, such as the growing amount of phosphates in food as manufactur-ers turn to additives other than sodium to preserve foods and make them palatable. Phosphates are difficult to clear for those living with kidney disease.

“Renal nutrition is definitely an excit-ing field,” she says. “There are always new research and new studies coming out that I need to keep on top of.” But the real reward is when she sees a patient whose blood work really improves because they’ve taken the diet to heart.

Helping to revive interest in food is right up there too. “As dietitians it’s impor-tant that we focus on the food because at the end of the day you don’t have potas-sium for lunch; you have food.”

“It was such a refreshing change

to start focusing on what our patients

could have”

Bon Appétit!June Martin is passionate about food that renal patients can actually enjoy.

by Mary Baxter

June Martin (left) with Kathryn Richardson, National President, The Kidney Foundation of Canada


LIVING WELL

kidney.ca/ontariowalk

With AppreciAtion to oUr proVinciAL SponSorS

Walk in your community: Belleville • Brantford • Brampton

Caledonia • Durham RegionGuelph • Hamilton

Kingston • Kitchener Iroquois Falls • London

Mississauga • North Bay Oakville • Orillia

Ottawa • Pembroke Perth • Peterborough

St. Catharines • Sarnia Sault Ste. Marie • South Porcupine

Strathroy • Sudbury Thunder Bay • Tillsonburg

Toronto • York RegionWindsor/Essex County

We love the enthusiasm and creativity of our 2011 teams. Over 180 teams registered for the Give the Gift of Life Walks and the creativity in your team names and walk at-tire were simply outstanding. Whether you were honouring the memory of a loved one or celebrating your family ties or your Renal Unit family, we were inspired by your cre-ativity. Among some of the team name fa-vourites—Dialysis Dynamos, Diana and the Renal Supremes, Hurry Up and Wait, Kid-ney Kickers, Trying to Make Cents, Kidneys UHNite, The Walking Nephrons, The Renal Rebels, The Rolling Kidney Stones, Urine Trouble, Spare Parts, 3 KDNYZ and Cheers for Peers.

The SpiriT of The Walk

Thank you for being part of something bigger.

FUNDRAISING



EAT TO LIVE

This fall, 33 communities held walk events in an effort to raise awareness

of kidney health and organ donation. Through your col-lective effort, you raised funds and took steps to help improve the lives of families affected by kidney disease.

“This year’s theme was, “Be part of something bigger,” and we certainly feel that this event in particular illustrates how each one of us is part of a much larger kidney community,” said Anthony Tirone, Director, Community Campaigns and Community Development. “I’m thrilled to announce that col-lectively we raised more than $485,000.”

Walks are a community ef-fort embraced by participants in communities of all sizes. They provide a unique oppor-tunity 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. Each year, the walks ex-pand to include new communities; we were pleased to welcome the following 2011 new communities, most of which were organized by volunteer leaders: Brampton (Max Kazman), Oakville (Ron Newman), Tillsonburg (Greg and Anita D’Hulster), Penetanguishene (Mary Smith and Penny Copeland), Manitowaning (Dorothy Chapman) and Caledonia. In addition, we would like to acknowledge the volunteer leadership of Sarah Milligan (Orillia), Roger Wharmby (Durham Region), Heather Tarnopolsky (Sudbury), Shelley Green (Peterborough), Marlene Smith (Iroquois Falls, South Porcupine), Lisa Calcutt (Strathroy), Andrew Hopkins (North Bay), Brenda Barham (Brantford), Carrie Austin (Guelph), Brenda Dube (Perth), Kim Wagner (Pembroke) and Annie François (Brock-ville). These volunteer leaders are true champions of the cause.

Special thanks to the support of our provincial sponsors—Amgen, Baxter 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. Interested in learning more about how you can host a Kidney Walk in your community? Please contact Daniela Piotrowski at [email protected] or call 1-800-387-4474 Ext.4964 to learn more.

FUNDRAISING



MEDICAL RESEARCH

Dr. Norman RosenblumLeading Pediatric Nephrologist Awarded 2011 Medal for Research Excellence

For his internationally recognized research in the area of pediatric nephrology, his outstanding role as a clinician scientist and his leadership in mentoring Canada’s next generation of kidney researchers, Dr. Norman Rosenblum has been awarded

The Kidney Foundation of Canada’s 2011 Medal for Research Excellence. Each year, The Kidney Foundation presents The Medal for Research Excellence to a Canadian researcher whose work is deemed by peers as having improved the treatment and care of people living with kidney disease.

A graduate of Dalhousie University, Dr. Rosenblum is currently a pediatric nephrolo-gist and clinician scientist at the University of Toronto and the Hospital for Sick Chil-dren. He completed his postgraduate training in Pediatrics and Pediatric Nephrology at Harvard University, where he also began his research training in cell and molecular biology. He now holds a Tier 1 Canada Research Chair in Developmental Nephrology and is an international expert on experimental (mouse) models of renal development that replicate malformations in the human kidney.

“Outstanding clinician scientists are able to identify problems in the field when working with patients and also have the skill set to address the issues in a research laboratory setting,” says Wim Wolfs, National Director of Research for The Kidney Foundation of Canada. “Dr. Rosenblum is without question an outstanding clinician scientist.”

Dr. Rosenblum’s research work is focused on studying malformations which occur during development of the kidney and urinary tract. Poorly understood, these abnor-malities result in a whole family of diseases that are the leading cause of childhood renal failure. Yet, his laboratory has provided important new insights. Specifically, they have succeeded in genetically modifying the function of a number of critical protein pathways, which in turn affect the work of key cells. By manipulating the amount of intercellular communication or “signaling” in these pathways, his research team has generated mouse models that replicate human problems. The malformations appear in a number of ways, from anomalies in the number of kidney filters (nephrons) and the

“Outstanding clinician scientists are able to identify

problems in the field when working with patients

and also have the skill set to address the issues in a

research laboratory setting”

To learn more about Dr. Rosenblum’s work, his research teams and how the revolution in genetics has impacted kidney disease research, visit www.kidney.ca/researchexcellence.


MEDICAL RESEARCH

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 Steps1. 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.

integrity of kidney tissue to the swelling of the kidney or urinary tract (a condition known as hydronephrosis). Investigating the roles of signaling pathways in their particular context during the actual process of kidney development is vital, providing unprecedented knowledge and understanding of the function of specific genes and the genesis of specific diseases. This can potentially lead to novel treat-ment of the disease itself and improved health for patients.

A patient-centered researcher, Dr. Rosenblum is also a much sought-after mentor. For the past 10 years he has been the Principal Investigator of an interdis-ciplinary program that trains clinician-scientists in the field of child health in Canada. The principles of the program, which links 17 universities across the country in seven child health disciplines, have served as a model for others. “Dr. Rosenblum’s launching of the Canadian Child Health Clinician Scientist Program was instrumental in helping to shape the Kidney Research Scientist Core Education and National Training Program founded by The Kidney Foundation and multiple partners in 2005,” says Dr. Kevin Burns, last year’s recipient of the Medal for Re-search Excellence and Program Director of the kidney-focused, researcher training program known as KRESCENT.

Since first being published in the journal Pediatrics nearly 25 years ago, Dr. Rosenblum has had 14 book chapters and over 60 manuscripts go to press. Most recently, he is the senior author on an article in the prestigious Journal of Clinical Investigation (JCI), in which his laboratory has shown that a particular protein signaling pathway, known as Sonic Hedgehog, controls cells that are essential for the rhythmic contractions of the ureter in mice. Failure of this system results in a condition frequently seen in pediatric nephrology, known as non-obstructive hydronephrosis. This latest finding could have significant implications for improv-ing treatment of the condition.

Kathryn Richardson, National Presi-dent of The Kidney Foundation, was delighted to present Dr. Rosenblum with the Medal for Research Excellence. “Dr. Rosenblum was a member of the team when my son had a kidney transplant at 16 years of age. The operation went well, but we had several tense weeks afterwards as his body tried repeatedly to reject the kidney. Dr. Rosenblum took time to make a special visit to us, offering calm support and encouragement. I will never forget that moment.”


PERSONAL STORY

Shefale Urva had a promising career making digital special effects for cartoons. A year after the wedding, she and her husband Subir, who live in Laval, welcomed the birth of their first daughter, Sakshi.

Then, in 2002 when she was 29, Shefale learned she had kidney disease. Only 40 percent of her kidney function remained.

Shefale qualified for peritoneal dialysis (PD), which cleans the blood and removes excess fluids by using the peritoneal membrane that surrounds the abdominal cavity. PD made it easier to care for her second daughter, Shreya, who was born prematurely and suffered health problems in her early years. She employed continuous ambula-tory PD (CAPD) to exchange solutions through a permanently installed catheter four times a day.

In 2006, Shefale had a transplant and it seemed like her worries were over. But she grew depressed. “It was a lot of pent up grief for everything I had been through with my daughter and what was happening with me,” she explains. She dreamed of a regular life. She imagined visiting family in Bombay.

Shefale’s transplanted kidney failed in 2010 and she went back on peritoneal dialysis. When her second transplant operation was postponed, she decided it was time to fly to India.

It wasn’t her first trip while doing PD: when Shreya was a year and a half, the family traveled to Mexico. Being on PD allowed Shefale to take a holiday while continuing to do her therapy, although the exchanges throughout the day made it hard for her to fully enjoy the vacation. This time, Shefale used automated PD (APD), which uses a cycler machine overnight to exchange fluids while she was sleeping rather than during the day. Now her challenge was in confirming access to her supplies while overseas and adapting her equipment to India’s different voltage levels. She tracked down someone who had used PD while in India. “He had the answers to everything, from the cost of a bag of solution to where to find the Aranesp injections that we need to make hemoglobin.”

Shefale and her family stayed in India for six weeks and she had her second transplant a few weeks after their return to Canada. “With this transplant it was faster [getting] back on the feet than it was the first time around,” she says. She resumed her old job and continued teaching dance, which she had begun three years earlier as a way to soothe her spirit. “Now things are going fine,” she says.

by Mary Baxter

[When] Shefale had a transplant ...it seemed like

her worries were over

Dance . . . InterruptedShe thought her life was just beginning when she got married at age 26

Top: Shefale and Subir enjoy a Christmas 2010 party dinnerBelow: Shefale and her daughters, Saskhi (left) and Shreya built wonderful family memories as they toured India


RENAL PROFESSIONALS

Nurse and patients attend one-of-a-kind summer camp

by Gary Chalk

“It is nice so to see our dialysis patients relaxing and having such a great time.” Liz Giacinti, a Registered Nurse at the S.C. Johnson Dialysis Clinic at the

Brant Community Healthcare System had returned from Camp Dorset, a lakeside resort for people on kidney dialysis treatment, where she enjoyed a working vacation with some of her patients and families who, in turn, were joined by other dialysis patients from across Ontario.

This summer was the eighth trip for Liz up to the cottage country dialysis camp that is made possible by the Lions and Lioness Clubs of Ontario and The Kidney Founda-tion of Canada.

George Jordan of Brantford, a retired district sales manager of western Ontario with Emerson Electric, and a patient at the Brantford General dialysis clinic, was fortunate to be able to attend the camp this year and raved about his experience.

“It was absolutely wonderful,’ he said. “I spent a week at Camp Dorset with my wife, Veryl, and our five grandchildren. We took coolers of food with us and we ate every scrap. There was kayaking, canoeing, row boats, horseshoes, an indoor pool and lots of hiking. We kept busy every minute.”

Each week 32 dialysis patients across Ontario take their families to the popular camp—the only one of its kind in Canada. The Brantford General dialysis clinic is allowed to send four patients (and their families), however, a nurse must also go for the week because dialysis doesn’t take a vacation: patients need to continue with their four-hour treatments three times a week.

“When it first opened, Camp Dorset had a bus where the patients were dialyzed,” Liz says. “It has come a long way over the years. This year, patients are receiving their treatment on brand spanking new dialysis machines that are now in place thanks to a very generous donation by Pepsi. There is a tennis court and hot tub, along with or-ganized activities such as bingo and a pot-luck dinner, even day trips. Patients love it.”

Peter Tutt, another dialysis patient at the Brantford General, also went to the camp this summer. In fact it was his second trip to the Lake-of-Bays resort.

“Unfortunately, another dialysis patient could not go to the camp and I had my name on the waiting list,” Peter said. “I went with a friend and our children and grandkids. We had a great time. The weather was exceptionally good.”

As part of the working vacation, Liz works three 12-hour shifts at the camp’s dialysis clinic. But then this is something she is used to, having been a dialysis nurse for 25 years, including 11 years at the Brantford General.

“I was born in Hamilton and a science teacher at high school told me I should become a nurse, so I did,” Liz says. “I enjoyed science and by the time I was 20 years old I was a nurse.”

“I started at St. Joseph’s Hospital in Hamilton on a surgical unit and when Credit Valley Hospital opened in Mississauga, I became a dialysis nurse.”

Liz particularly enjoys the ongoing relationship dialysis nurses develop with their patients. “Their life changes when they have to begin dialysis,” she says. “Patients become our family that we see three times a week and sometimes six days a week.”

Along with the rest of the staff in the Brantford General dialysis clinic, Liz organizes the annual Christmas party for the dialysis patients and their families. It is quite a party with about 200 people attending. She also helps organize The Kidney Foundation’s Give the Gift of Life walk event each September and has helped in the past with Living Green Ribbon events that promote organ and tissue donation.

“We love doing these things for our patients—even as much as the patients and their families enjoy them,” Liz says.

Gary Chalk is Director–Public Affairs for the Brant Community Healthcare System.

p Liz Giacinti, RN, and George Jordan, patient at the Brant Community Healthcare System dialysis clinic

An All-Inclusive Resort


LIVING WELL

Kids Transplant Camp 2011 by Stacey Pollock and Emily Ghent

The biggest and most successful ses-sion of Transplant Camp at CNIB Lake Joseph Camp was held August

7–13, 2011. This year 52 kids with heart, liver and kidney transplants, and five kids living with end stage renal or liver disease attended camp. Despite some wild and stormy weather, this session saw the great-est programming and spirit yet—canoeing adventures, swimming, campfires, sailing, fishing, pontoon boating, landsports, a spirited colour war, campfires, and of course, the hands-down favourite camp activity—tubing. This year also saw the initiation of the Leadership in Training Program which included the participation of eight of our oldest campers ages 16–18, which was a tremendous success. Finally, a surprise visit by hockey great Wendel Clark was a huge treat for our campers.

The laughter, friendships made, team spirit and joy of camp are hard to describe. It is an awesome site to see almost 60 kids of all ages sharing in the joy of camp, and the feedback from parents and kids has been phenomenal. A special thanks to the incredibly generous support of The Kidney Foundation of Canada, the Ken

p Andrew Sawatsky with Wendel Clark

Lake Joe Transplant Camp was the best week ever! I loved every thing about it. The swimming, paddle boating, canoeing, kayaking, camp fires, the food, capture the flag, nitro, colour war, soccer, fishing, basketball, shuffle board, water balloon fights, pontoon boat, football, tubing, sailing, card games, dancing, talent show mini putt and the double bike. When we were eating, I absolutely loved it. If we were caught with our elbows on the table, you had to sing a song or spell your name with your bottom or my favourite, was to go to the lake!!! Also not to mention in the middle of the meal as soon as people yelled shark attack, you had to stand on your chair, when they called air wave you had to hide under the table. Furthermore, when we were all eating we sang cheers like “We are table number 1” and “there ain’t no flies on us.” This was Amazing! It was wonderful waking up to Terrific music in the morning!

I loved how we all took our medications at the same time and see kids that had the same problem as me!

It was VERY easy making friends with everyone and the crew! I loved everything at Lake Joe! Therefore I want to say THANK YOU for accepting me and for providing me with this camp opportunity! I would LOVE to come back next year, that would be THE BEST! One day I hope to become a camp counselor so that I can help others experience what I did at camp!

By Eric

P.S. BEST WEEK OF MY LIFE!!!!!!!!!!!!!!!!!!!!!

Citron Memorial Fund, Intact and KRG Insurance Kids Charitable Foundation, Paul Martin, the David Foster Foundation, the Benjamin Walker Foundation, Sundial Homes, Moti Jungreis, and the numerous personal donors and supporters. Camp

was once again offered at no cost to trans-plant campers. A special thank you to the incredible team of committed volunteer nurses, doctors and staff that worked tire-lessly at camp and ensured it was the best and most magical summer ever.


COMMUNITY HIGHLIGHTS

Community Highlights

McMaster Swim Team

p The McMaster University Swim Team is a key supporter each year of the Give the Gift of Life Walk in Hamilton. The team walks in support of one of their coaches, Daniel Macaulay, who is also a dialysis patient. Un-fortunately, this year’s walk date conflicted with an important swim team event, but that didn’t stop the members from going the distance to support Daniel. On Sunday, October 2, the team took to the pool and each swam 5 km, raising pledges to sup-port The Kidney Foundation Canada. Thank you Mac Swim team for your support!

4th Annual Liz Ferrier Memorial Charity Pro-Am 2011 “Women Helping Women”

p On Tuesday, June 21, 2011 three remarkable ladies—Marla Dahlke, Michele Darling and Marilyn Rea—hosted the 4th Annual Liz Ferrier Memorial Charity Pro-Am to raise money for The Kidney Foundation in memory of their close friend, Liz Ferrier. The golf tourna-ment was an incredible success. The organizers, along with assistance from the staff at Credit Valley Golf Course, planned and executed an event that raised $26,844 in support of the Foundation. Their dedication to the cause allowed them to plan a flawless event which surpassed their original goal of $20,000. L to R: Marilyn Rea; Marla Dahlke; Ontario Branch Board member, Debbie Lanktree; Michele Darling; Adam Cherry (“Director of Golf” at Credit Valley Golf Course)

Greenfield Charity Golf Tournament Celebrates 20 Year Anniversary

u The Greenfield Golf Tournament took place at St. Andrew’s Valley Golf Course this year, attracting 144 participants and raising over $30,000. A third of the tournament proceeds are delivered to support research initiatives of The Kidney Foundation of Canada.



Biz X Beach Jam Tournament Champions

p The Kidney Foundation of Canada, Windsor and District Chapter volleyed for a $10,000 boost through net revenue profits generated by The Biz X Beach Jam Volley-ball Tournament held at On The Beach in Tecumseh on Saturday, June 18, 2011. From left, Jeremy Renaud, Jimmy El-Turk, Kyle Williamson, Corey Cole, Gabriel Bruzzese, Ryan Le, Erin Murphy, Denis Belanger, Scott Linnell, Liana Peters and Brandon Landry are joined by our sponsors from Biz X magazine and The Rock Patrol. Photo courtesy of Jack Rosenberg, publisher of In Play! magazine.

2011 Kidney Ride is one for the Record Books

p The Timmins-Porcupine Chapter hosted their annual Kidney Ride on September 10, 2011 and the weather couldn’t have been more perfect. Riders were treated to a delicious breakfast courtesy of The Con-naught Volunteer Firefighters. Riders took a four-hour ride down Hwy. 101 across to Essa Park Road to Kirkland Lake. The riders returned to Hoyle for prizes and a steak supper prepared by Kidney Foundation volunteers Anne, Joan and Linda. A special thanks to everyone who made a pledge to one of the riders and helped them raise more than $5,000.

“Competing for a Cause”

p In the last issue of Kidney Living, we introduced you to the dragon boat team—Team Transplant, and are now pleased to share their newest success. On Saturday, August 6, 2011 Team Transplant members were thrilled to accept their gold medals from the Iron Division at the Woodstock Rotary Dragon Boat Festival. The team came first with a time of 2:29.38 and you could not beat the excitement and team camaraderie that was in the air! If you are interested in joining the Team Transplant dragon boat team, please contact Donna Fleming at 416-516-4103 for additional details. Come out and compete for the cause!

1st Annual Chronic Kidney Disease Fundraiser

p The Kidney Foundation of Canada relies on the generous support of many volunteers and one of its vivacious young and dynamic ones is Chantal Vandereems. Chantal took it upon herself to stage her first fundraiser in support of the Founda-tion. Reaching out to businesses across the Ottawa area, she brought friends and family together for a fun-filled pub night at Buster’s Bar & Grill in Ottawa. Live enter-tainment was provided by the band, Ran-dom Play, and the dance floor was packed most of the evening. All funds raised will support Kidney Foundation research and programs.



November15 Kidney Connect Peer Support Group

Meeting, Kitchener15 Bowl ’11, Roll for Research, GTA16 Lakeridge Health - Kidney Patient

and Family Peer Support Coffee Club, Oshawa

16 Kidney Connect Peer Support Group Meeting, Thunder Bay

28 Kidney Connect Peer Support Group Meeting, Mississauga – NEW!

30 Impressions, Hamilton

December7 Kidney Connect Peer Support Group

Meeting, Kitchener13 Pasta Dinner, Thorold13 Kidney Connect Peer Support Group

Meeting, Thunder Bay18 Luz Mueca Memorial Bowl-A-Thon,

Ottawa21 Lakeridge Health - Kidney Patient


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.

January17 Kidney Connect Peer Support Group

Meeting, Kitchener18 Lakeridge Health - Kidney Patient


February15 Kidney Connect Peer Support Group



24 Pasta Fest, Sarnia

March1-31 Kidney Health Month3 11th Annual Marvin Valensky Memorial

Stick Spiel, Kingston8 World Kidney Day13 Kidney Connect Peer Support Group



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 [email protected]. 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.

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_________________________________________________________________________________If you have any questions or need more information about how the Foundation respects your privacy, email us at [email protected], Attention: Chief Privacy Officer.

Discover why some of the richest people in the world are not millionaires, they are volunteers.

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WHAT WOULD HAPPEN IF

KIDNEYRESEARCH

SHUTDOWN?

Research for results.Join us in the challenge.

www.kidneycampaign.ca

An estimated 2.6 million Canadians are living with

kidney disease or are at risk, and every day an average of

15 Canadians learn that their kidneys have failed.

The Kidney Foundation of Canada is about to undertake

a vital fundraising campaign – not to do what we’ve

always done, but to do more.

Our goal is to raise $73 million over 5 years, with over

$23 million already raised from individuals, corporations

and Foundations. These funds will allow us to expand

our highly-reputed research programs and implement

an ambitious national screening initiative.

We wouldn’t ask for your help. Unless you needed it.

To learn more visit our website.

Documents

Kidney Living Fall 2011