Kidney Living Sumner 2010

KIDNEY

living www.kidney.ca/ontario

Summer 2010 Volume 3 • Number 2

A PUBLICATION OF THE ONTARIO BRANCH

Summer Camp Fun!

What’s in this issue – Summer 2010 3 4 5 6 7 10 15 16 17 18

Taking a Step

19 20 21 22 23 26

A Daughter`s Love

Summer Camp Stories of Hope – Debbie`s Story Family Ties Volunteer Awards Fighting Anemia Taking a Swing at Kidney Disease SAS Try-A-Tri Birthday Wishes 2010 Initiative

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Bringing Hope to Haiti

A Need to Give Back Janet Bick Retires Oh What a Night! – Galabration 2010 Community Highlights Recipe – Fresh Berry Profiteroles

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 John L.P. Thorne 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

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

Making an ImPACKD

Government Relations Volunteers Needed

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

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Correction We apologize for an error that appeared in the Winter 2010 issue of Kidney Living.

Thank you to Madhu and Harnam Kakkar for including the Foundation in their Ruby Anniversary Celebration.

©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.

www.kidney.ca/ontario

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 kate@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 siobhan.bhagwat@kidney.ca

EDITORIAL

Taking a Step

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Photo credit: Jeffrey Steiner, www.steiner photography.1fp3.com

inter and spring have long been our traditional busy times here at the Foundation. During March—Kidney Health Month—thousands of our volunteers stepped out and changed lives one door at a time. In April, we joined forces with Trillium Gift of Life Network to step up our efforts to raise awareness and promote organ donation during National Organ and Tissue Donation Awareness Week. In April and May we took time to celebrate the accomplishments of our many volunteers who have laid the foundation and created the path that led us to where we are today.

As I worked through editing this issue, it occurred to me that all of our stories feature people who have taken huge steps to improve the lives of others living with kidney disease. From Kathleen’s desire to donate a kidney anonymously to Marie-Eve trying to make an ImPACKD (and no, I didn’t spell it wrong, you’ll have to read the story on page 11 to understand.) It only took one step to start a chain of events that made a significant change.

Throughout the summer, our volunteers and employee teams will be gearing up for our new busy time, the month of September, when we will host close to 30 Give the Gift of Life Walks in communities across Ontario (see back cover for a list of locations).

We invite you to walk with us and take a step. Together, we can take a giant step to help improve and enhance the lives of our kidney community.  Trish Reynolds, Editor

National Organ and Tissue Donation Awareness Week (NOTDAW) Living Green Ribbons (LGR)

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Photo credit: Chris Smith, The Brantford Expositor

rantford held a unique Living Green Ribbon event in May when a flash mob of dancers were captured by The Brantford Expositor and the event received frontpage coverage in the next day’s edition. Living Green Ribbons are typically held throughout the province during the third week of April, as a way to allow people to show their support of National Organ and Tissue u Brenda Barham, Brantford Living Green Donation Awareness Week. For the first Coordinator time this year, a LGR event was also held at Dundas Square in downtown Toronto, a joint venture of The Kidney Foundation, Trillium Gift of Life Network and Liver Foundation.

Planning for NOTDAW-related activities and shared key messages throughout the province was coordinated with Trillium Gift of Life, the Liver Foundation and other non-profit partners. This partnership resulted in a dramatic increase in the number of media stories, public awareness events and initiatives across the province.

Living Green Ribbons were also held in Sarnia, Thunder Bay, Ottawa, Kingston, Timmins, Windsor, London, Sault Ste. Marie.  Visit www.kidney.ca/ ontariolivinggreenribbon to view photos from this year’s event.

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COVER STORY

Summer Camp Summer Camp offers a welcome break for pre- and post-transplant kids

by Stacey Scott

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or many kids in Ontario summer is marked with fun-filled weeks spent at camp where they make new friends, swim, hike and enjoy campfire sing-alongs. Sadly, children awaiting transplant, along with those who have received a transplant, have specific needs that a regular camp just can’t provide. This results in young kidney patients missing out on common summer fun.

Now, thanks to a committed team of healthcare professionals and volunteers, clear skies, blue waters and cozy campfires await pre- and post- organ transplant kids at this year’s Kids’ Transplant summer camp.

Recognizing the need to have a camp accessible to more kids, a dedicated group of transplant professionals came together and formed the Transplant Advisory Committee.

Through their relentless efforts, an Ontario-based summer camp experience for children with, or who are waiting for, an organ transplant is now a reality. The camp takes into consideration the physical limitations, the special dietary needs, the nursing support for medication administration and the social support for these unique children. The Kidney Foundation of Canada is proud to support the 2010 campers.

“To watch children transform during a week is an incredible experience,” says Oliver Darlucio, Camp Nurse and Manager, Child Health Services, Dialysis Apheresis Program at The Hospital for Sick Children. “Each child learning independence, challenging their boundaries, being able to interact with each other socially and having unlimited fun, is a truly unexplainable experience.”

The CNIB Lake Joseph Centre, located in the popular Muskokas, will play host to the camp from July 18 to 24. The camp will accommodate approximately 40 transplant campers along with medical support and extra hands from volunteers. Children and youth wishing to attend must be medically stable as released by a medical physician and between the ages of 8 to 18. Currently, dialysis at camp is unavailable; however it is a future goal of the organizing committee.

“Time away from their home, parents and/or hospital, is refocused to make new friends, learn and gain independence, and most importantly, time to make lifelong memories,” says Darlucio.

Interested in getting involved? The camp is seeking a dedicated group of volunteers along with corporate sponsorship to ensure a sustainable future for this much-needed endeavour. Make your donation using the enclosed postagepaid envelope, or donate online at http://fundraising.kidney.ca/transplantcamp.

For more information contact transplantcamp2010@gmail.com.  t Oliver Darlucio

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PERSONAL STORY

Stories of Hope Kidney Health Month provided a timely opportunity to educate Canadians about kidney disease, its modifiable risk factors, and the importance of financial support for programs and services to help improve the quality of life for current and future patients.

March also proved the right time to encourage the sharing of experiences unique to the kidney community through the Kidney Stories of Hope campaign. Our judges were moved by the sincere and touching stories so many of you provided. Thank you all for your efforts. Your community engagement allows The Kidney Foundation of Canada to help improve the lives of all Canadians living with kidney disease.

The Underwood family and GOTCHya Covered

Debbie’s Story

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Visit www.kidney.ca/storiesofhope to read the 2010 stories selected from five different regions – BC, the Prairies, Ontario, Quebec and Atlantic Canada. Each regional submission awardee received a $500 cash prize from The Kidney Foundation of Canada, thanks to an unrestricted grant from Shire Canada.

n 2005 my husband began to experience symptoms (leg swelling, headaches, nausea) all of which he justified as being gout and migraines. In late 2006 after being treated for an infection in his leg, his blood pressure was taken and he was told “You need to see a doctor.” He had (coincidentally) a physical booked for the following day. A urine sample showed something was wrong—and we heard, for the first time, “Renal Failure.” Dan’s story begins here, at Stage 3 Kidney Failure, diagnosed with Focal Segmental Glomerulosclerosis. Thus, 2007 became our year of research, medications (with their side effects), diet changes and the emotional blow of being told that you have a chronic disease and finding a way to tell our children (7 and 3) that dad was sick. It was also the year we found The Kidney Foundation of Canada. In 2008 we discovered the Give the Gift of Life Walk – York Region was having their inaugural walk. In 2008 Dan realized how many people love and support him. We secretly formed our Team GOTCHya Covered, had a logo designed (a bumble-bee riding a motorcycle) and the team (family, friends, classmates) proudly wearing our shirts surprised him with a party.

This day will forever be in our memories. By the end of this year GOTCHya Covered hopes to have raised a total of $10,000 for kidney research. Kidney disease has changed our lives. Dan refuses to slow down and is doing everything he can to slow the progress of his disease. Recently at Toronto General Hospital, his specialist told him to “keep on doing what you are doing—it’s working, you have made my day!” (I asked if I could quote her.) It’s 2010 and he is still Stage 3!  Debbie Underwood Zephyr, Ontario

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PERSONAL STORY

Family Ties Diane Cappello received the phone call that more than 1,100 Ontarian’s wait for—a kidney was available for transplant.

by Trish Reynolds

According to the Trillium Gift of Life website, donated organs and tissue are given to individual recipients based on need, blood type, genetic match and other criteria. Directeddonation,” as it is known, is not practiced in Canada. Only through living donation can the recipient be designated. Living donation may be an option for kidney, liver or lung transplants. If you are interested in being considered as a living donor, discuss this with your doctor.

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ick Cappello, Diane’s husband, received the call on April 14 from St. Michael’s Hospital in Toronto telling him that there was a kidney with a potential match and they should make their way down to the hospital. Diane finished her dialysis and headed home; the nurses at the renal clinic—excited for her—took her off the machine 10 minutes early.

After a failed transplant three years ago—a donation from Nick—and a “false-alarm” call for a transplant a couple of years ago, Diane has been quietly waiting for the gift of life.

Arriving at St. Mike’s, the medical team began prepping Diane for the transplant; blood tests were needed to ensure a cross-match would work. “One of the nurses talked about a procedure that was needed to take antibodies out of my blood and add new antibodies in, a process likened to dialysis. As he left the room he said to me, ‘You should take this kidney.’ We decided to go for it. I started the procedure and Nick headed home to make some phone calls to our family.”

Meanwhile, over 200 miles away in Detroit, Michigan, a husband and father dealt with the traumatic news that his wife was brain dead following a brain aneurysm. A giver in life, Matt Alessandrini was sure that his wife, Jennifer Spence Alessandrini, 37, would want her organs donated.

Facing the unthinkable—a life without Jennifer—the donor coordinator posed another question which started a miraculous chain of events. “Do you know anyone on the organ transplant list?”

Diane Cappello, a distant cousin of Matt’s, lived with polycystic kidney disease and was waiting for a kidney. Transplant specialists from both sides of the border began working to make the miracle happen—a gift of life for Diane.

Nick arrived home from the hospital ready to share the news of the impending transplant with their family, especially Diane’s mother, Mary Tenesi. News of the transplant crossed the branches of the family tree, and it was Diane’s mother who first shared with Nick the unimaginable news of who was Diane’s kidney donor.

“Of course the medical team knew all along, and once my family knew, they too, kept it secret until I was strong enough and stable,” added Diane. “I never would have dreamed of anything like this. It was a miraculous gift and a very emotional time. I’m so very honoured.”

The first phone call between Matt and Nick was especially emotional. Many phone calls, many tears and a trip to Michigan in the fall, are now in the plans. “How do you say thanks?” asks Diane.

Two months later, Diane is feeling healthy. “My voice is stronger, I feel great. I can now get back to all the things I love, including eating all of the fruits and vegetables I’ve avoided while on dialysis.”

Diane understands from her doctors that this is St. Michael’s first cross-border kidney transplant. “The care I have received from pre-dialysis, when I was first diagnosed 14 years ago, to my first transplant, dialysis, and now this very special transplant has been outstanding. I can’t thank the medical teams enough.” 

VOLUNTEERS

Volunteer Awards We couldn’t do it without you.

It takes many volunteers with a wide variety of talents and areas of expertise to give an organization like The Kidney Foundation the richness it needs to make a real difference to the lives of those living with kidney disease. Throughout Ontario in the past several weeks, chapters have been celebrating local volunteer engagement at appreciation nights.

Provincial volunteer awards were presented at the Ontario Branch Annual General Meeting and Volunteer Celebration in Kingston on May 15, 2010.

The Ontario Branch Volunteer Awards Nomination Package is available in January.

For more information on the Branch Awards or the nominating process, please contact Carol Kostoff, Manager of Community and Volunteer Development, at ckostoff@kidney.on.ca or 905278-3003 Ext. 4972 or 1-800-387-4474 Ext. 4972.

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he Alfred E. Coll Award of Excellence, Leadership and Distinguished Service in recognition of an individual whose leadership and distinguished service has made a very significant contribution to the organization was presented to Dr. William Clark.

Dr. Clark has contributed to The Kidney Foundation for more than 17 years.

He began his contributions by hosting a croquet tournament in his front garden, raising approximately $40,000. The event changed over the years to the 100 holes of golf tournament, which has raised an amazing $600,000 to date.

In addition to his research and volunteer fundraiser hats, Dr. Clark plays a leadership role, having just recently completed his term as president of the Southwestern Ontario Chapter. He has given the chapter a new level of leadership. Dr. Clark has also brought to The Kidney Foundation many valuable community relationships and has helped to recruit three additional nephrologists to the board.

Dr. Clark’s personal commitment goes

Dr. William Clark

above and beyond. He always finds time to support the chapter’s activities and community outreach initiatives by attending numerous community events and in providing media interviews. He has leveraged his professional reputation to engage new volunteers, donors and patients at a chapter level.

The Karol Steinhouse Memorial Award is presented in recognition of an individual for his or her outstanding contribution to the peer support or self-help programs of the Foundation, such as a peer support volunteer, Foundation staff member or renal education group speaker. The award is named after the late Karol Steinhouse, who founded the first renal peer support program at Toronto General Hospital in 1988.

This year’s recipient is the Grand River Hospital Renal Program in Kitchener.

The Grand River Hospital Renal Program has been a tremendous partner to the Foundation as we have jointly developed and successfully launched the Kidney Connect Peer Support Group. In January of 2009 a plan for the group was formally presented to the Grand River Hospital Renal Program through its Renal Community Council. The Kidney Foundation received enthusiastic support to proceed in partnership with them to develop a Kidney Connect Peer Support Group.

The group offers an opportunity for those living with kidney disease to come together. Facilitators are very careful to ensure that people have a chance to speak, discuss issues and ask questions if they choose, or to just listen if that is what they are more comfortable with.

It is with our sincere thanks to Peter Varga, Director of the Renal Program, the entire renal team, the GRH Renal Community Council, and the Kidney Connect Peer Support Volunteer Group Facilitators that we have been able to establish this group and provide this worthwhile service to the people in their renal program.

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VOLUNTEERS

Dr. Ann Bugeja

Murray Sutherland

Mario Frangione

Dr. Ann Bugeja was presented with the Renal Professional Award. This award is an important way for the Foundation to recognize the valuable partnership we have with the many health professionals who work so tirelessly to make a difference to those living with kidney disease.

Dr. Bugeja, a nephrologist at the Riverside Campus of the Ottawa Hospital, began volunteering with the Eastern Ontario Chapter of the Foundation in 2007.

She is not only a volunteer Board member, but is an important and integral part of the chapter’s volunteer core which is focused on assisting the chapter to grow in the community.

As a member of the medical team who works closely with kidney patients and screens and selects potential kidney donors, Dr. Bugeja understands the urgency of not only educating the public on the importance of organ and tissue donation, but also on the symptoms and prevention of kidney disease, as well as the necessity of ongoing research.

a strong advocate for patients suffering from CKD, especially in the areas of patient transportation and dialysis services.

Public Awareness is key to our success as an organization. Not only do people need to know about the Foundation and what it does, but we need to make people aware of what calls to action we encourage them to take.

Through many channels, including media, we are able to further spread the word about kidney health and organ donation. One partner who shines brightly in this arena is the recipient of our Public Awareness Award, Bob Derro.

Brother Bob, as he is affectionately known on his morning radio show on Rogers Oldies 1310 in Ottawa, is a true advocate and an ambassador for The Kidney Foundation of Canada.

He conducts interviews with patients and volunteers to ensure that their stories

Volunteer of the Year is a big title to bestow on someone, but it is a perfect fit for one of our volunteers in Sarnia. Murray Sutherland was named this year’s Volunteer of the Year. Murray has been an active volunteer with the Sarnia–Lambton Chapter since April 2002.

Not only has he been on the chapter Board since then, he has also been an active supporter of local fundraising initiatives, and annual events such as March Drive and the Walks.

A kidney patient himself, having been on dialysis for the last three years, Murray has been an active advocate for the Foundation in the community. Murray is also

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Outstanding Community Partnerships are a fantastic measure of the Foundation’s success in the many communities in which we have presence across the province.

The Italian Night Dinner Committee in Ottawa is one such valuable community partner.

The committee, led by Founding member Agostino Monteduro and co-chair Mario Frangione, has been successfully raising money and awareness for The Kidney Foundation of Canada for the past 26 years.

Mr. Monteduro began his long journey of living with kidney disease after suffering a fall at work in 1983. He has undergone dialysis and has had two kidney transplants since then.

Mr. Monteduro put his energy towards fundraising. He gathered a group of individuals from the Italian community to help him with a number of fundraising initiatives, including the idea of organizing an Italian Night themed fundraising dinner.

Thanks to this committee’s ongoing dedication, relentless efforts and hard work, the Italian Night Dinner has successfully grown over the years, raising over a half-million dollars for the Agostino Monteduro Endowment Fund. This fund focuses on the advancement of kidney care, education and research.

Each member of this committee is truly dedicated to the cause. They pour their hearts and souls into the organization of this event. They have watched it grow from an informal dinner into a 500-person, soldout annual event.

Bob Derro

VOLUNTEERS are being heard. He continually promotes Kidney Foundation special events and programs, including March Drive and Kidney Car. He is also very open in discussing the issues and importance of organ and tissue donation on air.

Outstanding Corporate Partnerships are formed in many ways. We are pleased this year to honour Rainbow Printers Ltd. Sam, Donna and Joe of Rainbow Printers in Thunder Bay have been great supporters of the local Northern Superior Chapter for 15 years. Each year they continue to donate their time and support by printing all materials that are needed for Thunder Bay’s local events.

They have created posters, ads, golf score cards, tickets and other items over the years as they are needed. They ensure that it is always done right and on time, and at a great discount or in most cases completely sponsored.

The Patient Programs Award was presented to the Volunteer Van Drivers in Sarnia-Lambton.

In June of 1991, the Sarnia-Lambton Chapter was made aware of the ongoing need for transportation for dialysis patients.

Most patients at that time had to travel back and forth to London three days a week for their life-saving treatments – a 220 kilometre return trip.

The chapter was approached by a patient volunteer about finding a funding source to purchase a van to provide transportation services for the patients. The “source” was found—The Independent Or-

Jim O’Brien

John Russell

der of Foresters. They generously donated our initial vehicle, and over the years, two additional vans have been donated to the program by other groups.

Each driver spends up to eight hours from the beginning of their trip to the end, picking the patients up at their homes, delivering them to their treatments in London and returning them safely to their homes following treatment.

Over 900,000 kilometers have been accumulated on the road since the van program started in 1991.

The backbone of the organization is our volunteers and the backbone of our van program is our wonderful, dedicated drivers.

The Excellence in Fundraising Award is given in recognition of an individual, chapter or team that has developed and implemented a fundraising program that attains or exceeds its revenue goal. The 2009 award was presented to John Russell, Executive Director, Federated Health Charities Campaign. For more than 27 years, people in Ontario Public Service workplaces have conducted an annual spring campaign to support research, care, and education programs of Ontario health charities. With a theme of “More Charities…More Choice,” the most recent canvass raised more than $2 million for the 16 health charities it supports. Over the years, The Kidney Foundation has benefited in the hundreds of thousands of dollars to support our programs and research.

The President’s Award is presented in recognition of an individual or group who has assisted the President in advancing our mission and vision. Jim O’Brien, Executive Director of the Ontario Branch was presented with this year’s award by Peter Davis, immediate past president of the Ontario Board of Directors. Peter remarked that Jim’s strong leadership and his exceptional support during Peter’s tenure as President made it easy for him to provide volunteer leadership to the Branch. The last three years have been busy as the Branch focused its efforts on building capacity, and engaged in key planning processes—such as using a Balanced Score Card approach—to ensure that we are headed in the right direction. 

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LIVING WELL

Dr. Norman Muirhead

Fighting Anemia Fewer blood transfusions translate to overall wellbeing for patients on dialysis

by Mary Baxter

The treatment can raise patients’ hemoglobin value to nearly normal levels in eight to 12 weeks— and maintain them.

The Foundation produces a number of educational brochures in electronic and print formats including a brochure on Anemia and Chronic Kidney Disease. Visit kidney.ca/ontario and click on the Programs & Support button or call 1-800-387-4474 Ext.4971 for your free copy.

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niversity of Western Ontario Professor of Medicine Dr. Norman Muirhead, a specialist in nephrology, counts the emergence of the treatment of anemia with the hormone erythropoietin as one of a handful of life-altering events in his decades-long career.

In December, 1986 he uncovered two scholarly articles that discussed treating anemia with epoetin alfa. Using cells from mammals, synthetic erythropoietin hormone was engineered to be identical to natural erythropoietin hormone. The hormone is a chemical messenger that tells the bone marrow to make more red blood cells, which carry oxygen from the lungs to the body’s tissues. The kidneys make erythropoietin; how well they work influences how much is produced. Less erythropoietin means fewer red blood cells, which causes anemia. Doctors use a hemoglobin value to quantify blood’s total red cell content. Anemia can occur when hemoglobin values fall below 130 grams per litre for men or 120 g/L for women.

At the time when Dr. Muirhead read these articles, values for people living with chronic kidney disease typically hovered between 60 and 70 g/L. Fighting anemia’s symptoms—fatigue and impaired function—was a fact of life.

Treatment included blood transfusions, iron preparations and, in some cases, anabolic androgenic steroids. Their effectiveness was short-lived. “It wasn’t unusual to see patients who had received several hundred blood transfusions,” he says.

Dr. Muirhead became involved in clinical trials of the erythropoietin-stimulating agent. He administered Canada’s first dose to a patient in 1987.

The treatment can raise patients’ hemoglobin value to nearly normal levels in eight to 12 weeks—and maintain them. Once or twice-weekly injections are under the skin so patients can administer their own.

The agent can produce whatever hemoglobin value desired and the medical community settled on a range of 110 to 120 g/L as “the best compromise to making the patients feel better and not causing additional problems,” says Dr. Muirhead. Recent studies indicate using the agent to generate values above 120 g/L may increase the risk for cardiovascular problems.

Blood transfusions are still necessary at times, he adds. That’s because patients on dialysis take blood thinners, which carry an increased risk of bleeding. But their rate has dropped 70 to 80 percent from the 1990s, when those on dialysis on average received two units of blood a month.

The treatment has made a huge difference in chronic kidney disease patients’ overall sense of wellbeing by making life more comfortable on dialysis. Dr. Muirhead recalls one patient whose transplant was failing in the 1990s who wanted to die rather than go back on dialysis. He went back and, with the agent, “felt just fine.” 

ADVOCACY

Making an ImPACKD How does calcium affect your health?

by Trish Reynolds

Improving patient advocacy in CKD ImPACKD is a group of CKD patients and caregivers from across Canada who are committed to raising awareness of the challenges faced by CKD patients.

ImPACKD has established a mandate that will shape their roles as an advocacy body for like-minded CKD patients across Canada. ImPACKD will: • Influence progressive policy changes at local, provincial and federal levels of government to benefit CKD patients • Represent Canadian CDK patients and their families • Provide a strong voice for Canadians living with CKD • Collaborate with existing cause-related organizations to further common issues facing multiple disease states • Challenge current clinical CKD practices in Canada • Advocate for equal and open access to all available CKD treatment options

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f you were asked whether calcium is healthy for you, the answer would likely be yes. But for the two million Canadians living with chronic kidney disease (CKD), their answer may be no.

Most Canadians living with CKD have likely never spoken with their physicians about calcium and the serious health risks associated with its overuse. This is where the story of ImPACKD (Improving Patient Advocacy in Chronic Kidney Disease) begins.

In the spring of 2009, a group of patients from across Canada were assembled to gain insight into the best ways to communicate to the kidney disease community. Six participants were identified as potential members of a patient coalition. In the fall of 2009 the group launched their first public awareness campaign about the overuse of calcium in some kidney patients.

Marie-Eve Chainey, a nocturnal hemodialysis patient, was thrilled to be invited to the initial meeting. She is now a national spokesperson for ImPACKD. “There are so many issues to tackle; we need this group to give a voice to kidney patients. Through this group we can help make change in the treatment of kidney disease, educate and teach people how to advocate for themselves or their loved ones,” said Marie-Eve. The group hopes their new website—www.impackd.ca, scheduled to launch later this summer—will attract the attention of even more kidney patients. “By joining our voices together, we can make change,” added Marie-Eve. As ImPACKD develops, the group hopes to have better representation from across the country.

Marie-Eve was only 18 when she learned that her kidneys had failed. Traveling abroad in Spain at the time, training for her favourite sport, high jump, Marie-Eve’s kidney failed abruptly, leaving her clinging to life. A month later she was able to travel home to Kapuskasing, Ontario where she encountered further setbacks. It wasn’t until two years later, when she began nocturnal hemodialysis, that she began to experience real changes.

“After a week of nocturnal hemodialysis, I was able to wash my own hair, for the first time in two years! With no warning, tears started pouring down my face. There I was, my arms above my head—washing my hair! I had no idea what was going on, I had tears of joy for being able to wash my hair. As little as it may seem, that was the very first step for me, the beginning of my independence,” added Marie-Eve. It took many small steps for Marie-Eve to get where she is today, eight years later.

“People often ask me how I stay positive through it all. My answer to that is that as long as I have goals and dreams, nothing will stop me. My very first goal after getting sick was Summer 2010 / Kidney Living /

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ADVOCACY to be able to walk again; I then changed it to being able to high jump again. Today, my goal is to promote nocturnal hemodialysis across Canada by being the first dialysis patient to qualify to the National Track and Field Championship.”

Volunteering for ImPACKD and The Kidney Foundation of Canada gives Marie-Eve the chance to make a difference, to help make change and create a better life for the kidney community. “There are so many issues to tackle, and information to provide to all Canadians living with kidney disease.

From access to medications, to dialysis treatments, to transportation—there are so many issues we can work on together.”

“I am passionate about this group, about the opportunity to connect Canadians living with kidney disease.” The ImPACKD tagline says it best: Inform, Inspire and Improve. “We will give people information and help give them the tools to advocate for themselves. We will strive to inspire them to use their voice and improve their situation,” added Marie-Eve. 

Genzyme Canada has been a longstanding and generous supporter of The Kidney Foundation of Canada and the nephrology community overall. In addition to their research investments and capacity-building support in Ontario, the company has also made an unrestricted grant to the ImPACKD group to facilitate the efforts of this committed group of patients and volunteers.

Pictured L to R at the Italian Night in Ottawa are: Mark Lewandowski, Regional Sales Manager – Ontario and Western Canada, Genzyme Canada; Susan Storey, Senior Director of Development, The Kidney Foundation of Canada; and Patrick van Gelder, Director, Renal Business Unit, Genzyme Canada.

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1-866-788-2277 • kidney.ca/ontario

PERSONAL STORY

Bringing Hope to Haiti The world was stunned when the devastating images captured shortly after the earthquake in Haiti started flooding TV screens.

by Stacey Scott

H

aiti—already facing unimaginable hardships—was now rocked by a devastating force of nature. For many, including Dr. Jeffrey Zaltzman of Toronto, the need to help was overwhelming. But amidst such chaos, how does one even start clearing a path to get to the centre of the chaos?

“I just started to send out a bunch of emails,” recalls Dr. Zaltzman, whose process in volunteering was really a fishing expedition. Dr. Zaltzman is the director of St. Michael’s Hospital Kidney Transplant Program and Medical Director of Trillium Gift of Life Network. He sent out numerous emails until something caught; his email to The Jewish General Hospital of Montreal brought a response, and soon he was on his way to Montreal to participate in a humanitarian relief effort conducted in cooperation with Israeli Defense Forces (IDF).

“I got chosen on Thursday and flew out on Saturday, just 12 days after the quake hit on January 12,” says Dr. Zaltzman, who was on the ground in Port-au-Prince, Haiti within 48 hours, along with a volunteer group of 14 nurses and another physician. “I wasn’t really sure what to expect,” says Dr. Zaltzman of his first international aid trip.

“It was chaotic.”

Dr. Zaltzman, along with a dedicated team of nurses and physicians, hit the ground running. After unloading medical supplies and driving hours to locate the makeshift hospital, their working day quickly started. During the time he spent with what he calls “the incredibly organized and efficient IDF,” Dr. Zaltzman provided a roster of medical support to patients who had been rescued from the ruins by sniffer dogs, dropped off by pick-up trucks or simply just appeared at their gates. Within two days of the team’s arrival, critical medical needs were dwindling and the Israeli government decided that Summer 2010 / Kidney Living /

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PERSONAL STORY

the urgent mission was complete. Still wanting to help, Dr. Zaltzman and his team were introduced to a new hospital set up by the University of Miami.

Initially, the Miami makeshift hospital lacked the same level of organization that IDF had, but thanks to the contributions made by his team and other volunteers, it improved on a daily basis.

After one week spent in midst of the destruction, Dr. Zaltzman was happy to be back in Canada but felt guilty about those left behind. “They were very desperate and there was nowhere for displaced people to go.”

“On my last day, a family member of one of the patients asked if I had toothpaste and a toothbrush. I pulled both items out of my knapsack. I gladly offered him the toothpaste, but told him the toothbrush was quite ‘used,’ He happily accepted both items.”

Although he has no aid trips planned in the foreseeable future, the experience hasn’t hampered any other endeavours. “I may go in another capacity in the future.” In the meantime, Dr. Zaltzman continues his work within the renal community through St. Michael’s and TGLN and through his ongoing involvement with The Kidney Foundation of Canada as a member of the Ontario Branch Board of Directors. 

 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 stacey.scott@kidney.ca. Please allow up to 30 business days to update our records. q Please take my name off the contact list for this newsletter. q I do not want my name to appear on The Kidney Foundation of Canada’s other contact lists.

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

e-newsletter

Get Kidney Foundation news direct to your inbox by registering for our free monthly e-newsletter today. Receive the latest news and information aimed at people living with kidney disease, their families and supporters.

Find out about how the Foundation can help you, what you can do to support kidney patients, and what’s happening with kidney research in Canada.

You’ll also receive regular e-alerts updating you about fundraising events, advocacy campaigns, new Kidney Foundation merchandise, and much more. Register today—visit www.kidney.ca/ontario and click on “Get Email Updates.”

FUNDRAISING

Photo credit: BigStockPhoto.com/2495128

Taking a Swing at Kidney Disease People will go to great lengths to raise funds for a cause that they care deeply about.

by Stacey Scott

A

nephrologist in London is taking his passion to a whole new level by getting in the ring with some of Ireland’s best amateur boxers.

Dr. Faisal Rehman, Program Director of the division of nephrology at London Health Sciences Centre, will be one of the amateur boxers putting up a fight against kidney disease at this year’s Showdown in the Downtown. This formal affair will challenge Canada’s top amateur boxers against the best Ireland has to offer. Funds raised will go directly towards research that will help fight kidney disease and improve patient outcomes after organ transplantation.

Dr. Rehman, who grew up a huge boxing fan, took up the sport as a young man. Eventually, medical school and work

would take priority in his life and would lead him to hang up his boxing gloves.

After years of living an inactive lifestyle he eventually went back to boxing as a way to regain control of his fitness and overall health.

As an integral part of the nephrology community in London, Ontario, Dr. Rehman knew more money was needed to support research and clinical trials. By combining his two passions, a boxing fundraiser for kidney research was conceived.

Last year’s event featured Canada against the United States and raised $110,000 for the Kidney Clinical Research Unit. This year the money raised will be allocated to three places—the Matthew Mailing Centre for Translational Transplant

Studies, the Kidney Clinical Research Unit and The Kidney Foundation of Canada.

The second annual Showdown in the Downtown takes place on Friday, September 24, 2010 at the London Convention Centre. Tickets are $250 per person and include dinner, drinks, a silent auction and a card full of competitive bouts.

For ticket information, sponsor tables and event information visit www.showdowninthedowntown.com. 

Yo u c a n b e a K i d n e y F o u n d a t i o n

MVP

when you wear your n e w B a s e b a l l J e r s e y. only

$20

plus shipping

Call Anthony Tirone at 1-800-387-4474 ext.4962 to place your order.

A variety of sizes from adult small to 3X are available, in black or green.

Not all sizes are available in both colours.

Summer 2010 / Kidney Living /

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FUNDRAISING

SAS Try-A-Tri For the eighth consecutive year, SAS Canada has been recognized as one of Canada’s Top 100 Employers.

SAS

Fun Facts About the Milton Triathlon • Milton is one of the most historic race courses in all of Canada, having hosted the National Championships as well as many international races over the last 25 years.

• Milton Triathlon has had past Hawaii Ironman Champions, past World Champions and many elites from around the world racing on the beautiful Kelso site.

• For the sprint competitors, the 6th Line Hill on the bike course is infamous for its early climb. The climb is 1.4 km long. At 1 km into it the hill flattens out somewhat to give you a brief reprieve.

After that it starts to climb again for the last .3 km. Then you are at the top! On the return, bikes can reach speeds over 80 km/hr down this hill.

• Try-a-tri – 276 total participants – 3 did not finish • Sprint – 488 total participants – 11 did not finish • Oldest participant – 78 years old

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—a business analytics software and services company—encourages its employees to contribute to various charities and extracurricular activities in order to achieve excellence both in and out of the office.

This year on the morning of Sunday, June 6, a group of SAS Canada employees gathered to test their willpower for a fundraising triathlon in Milton, Ontario. They were motivated by the friends and family who cheered them on, but mostly the desire to “do good” for their charity of choice—The Kidney Foundation of Canada, Eleven SAS participants competed in one of two races: The Try-a-Tri (375 metre swim, 10 km bike and a 2.5 km run) or for the more daring, The Sprint (750 metre swim, 30 km bike, 7.5 km run).

The Kidney Foundation of Canada was chosen because several people at SAS are affected by the disease in some form or another so they felt that it was a foundation that hit close to home. To date, the 11 SAS participants have raised over $17,400 in support of The Kidney Foundation of Canada, with additional funds still trickling in.  Team SAS members

FUNDRAISING

Birthday Wishes 2010 Initiative

F

or many people, a birthday is the perfect excuse to splurge and be self-indulgent. But this year, Amanda Vokey and her large group of friends decided to do something a little different to celebrate.

“I came up with this idea to challenge our group of friends,” says Ben Pavey, a close friend of Amanda’s and the person behind the Birthday Wishes 2010 initiative.

“We had way too much disposable income for college-aged people.”

So how does the Birthday Wishes 2010 Initiative work? Instead of the group spending money on a lavish meal at a trendy restaurant for every single birthday, each person from the group gets to choose a charity to which they’d like to donate their funds. For Amanda’s birthday, everyone pitched in and donated funds to The Kidney Foundation of Canada, her charity of choice.

“I love what you stand for and the huge effort you are making to help those diagnosed with kidney failure” says Amanda

in her birthday card to The Foundation “Twelve years ago you helped my father, and my family is so grateful for your love and care.”

The group from London has raised funds for several other organizations that

are significant to the birthday boys and girls and they plan to raise more.

“Our goal is to raise $5,000 this year, and we’re almost halfway there!” says Ben enthusiastically. 

Third Party Events An opportunity to host your own event

T

he Kidney Foundation of Canada welcomes and encourages third party events—special fundraising events and promotional campaigns organized and sponsored by outside individuals and companies that benefit The Kidney Foundation of Canada. We are very fortunate to receive this type of support and to have the opportunity to build relationships, public awareness and media attention within our community. We encourage you, our readers and supporters, to participate in an activity that you, your friends and your family will enjoy, while supporting the fight against kidney disease. It doesn’t matter whether your event is large or small. It could be a yard sale, a car wash, a golf tournament, a family barbeque, a staff retreat, a team-building event or even an elaborate fundraising gala. While there are countless possibilities for the nature of your event, the end results are the same, namely the unwavering support of our vision—kidney

health, and improved lives for all people affected by kidney disease.

There are many ways we can assist you in the conception and execution of your own memorable event in support of The Kidney Foundation. We can: • aid in budget development and venue selection • help you to secure insurance for the event and assist you with supplier referrals and coordination • help with the preparation of financial statements • provide volunteers to assist with the management of your event • help with event evaluation • assist with promotional copy/print material creation, fundraising webpage construction, receipt tabulation/distribution • provide select consultation services to you.

Bring your creativity to your own event!

We ask only that you adhere to our basic “Third Party Event Guide,” mandate and core values. The guide outlines steps and tips to creating your own successful events.

If you wish to organize a third party event, please contact our Fund Development Department (905-278-3003 Ext. 4949) or visit our website (www.kidney.ca/ontarioevents) and click on third party events at the bottom of the page.

We would like to take this opportunity to thank the many individuals and organizations that have organized, sponsored and participated in events and activities throughout the year, with the proceeds benefiting The Kidney Foundation of Canada. We appreciate your interest in supporting our Foundation; your contribution is invaluable.

Remember, we are always here to help.

Your success is our success, and together we can reach new heights. 

Summer 2010 / Kidney Living /

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Photo credit: BigStockPhoto.com/3127845

VOLUNTEERS

Government Relations Volunteers Needed

T

he Ontario Renal Network (ORN) recently announced the establishment of 14 Regional Renal Program Steering Committees (RRPSCs) aligned with each of the Local Health Integration Networks (LHIN). The purpose of these committees is to provide a means of communication for all regional Chronic Kidney Disease (CKD) programs in Ontario.

The Kidney Foundation is committed to having a representative on each of these committees. “The representatives will participate actively in the meetings, discussions and activities and will bring forward issues relevant to people with kidney disease and the priorities of the Foundation,” said Alison Thomas, Chair of the Government Relations Committee.

The Ontario Government Relations Committee has established a sub-committee to recruit and train volunteers to represent The Kidney Foundation on the Ontario Renal Network Regional Renal Program Steering Committees..

“The role of The Kidney Foundation representatives on the ORN Regional Renal Planning Steering Committees will be representative of the important collaboration between The Kidney Foundation and the newly formed Ontario Renal Network. Most importantly, our volunteers will be the voice of CKD patients—involved at the planning level—for service provision for their local regions,” commented Alison.

We are looking for representatives who are engaged with The Kidney Foundation, knowledgeable about CKD and able to work as a team member, communicate, advocate and influence others. “As an extension of the Foundation’s Government Relations Committee, their understanding of CKD and insight into the workings of The Kidney Foundation will serve to assist us in advocating for patient services at the regional table,” added Alison.

You can help by sharing this information with people who may be interested in joining one of the 14 committees. For a complete position description and further information about this great opportunity, please contact Mary Floro-White, Government Relations Coordinator at 905-278-3003 Ext. 4974 / Toll Free: 1-800-387-4474 or mflorowhite@kidney.on.ca. 

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PERSONAL STORY

A Daughter’s Love There was no hesitation when it came to saving her father’s life.

L to R: Samir Basaria, Jaanu Basaria, Thevy Vara, Mr. Vara, Jany Vara and Abby Vara at the front sitting down.

by Stacey Scott

A Take a Step Give the Gift of Life Walks are a special occasion for dialysis patients, organ transplant recipients, donor families, living donors, the medical and business communities and the general public to celebrate advances in kidney health and organ donation. These Walks are empowering for patients undergoing dialysis, or for those who have given or received an organ transplant. They energize the community and help people recognize that they can make a difference. Walks are taking place in 29 communities across Ontario during the month of September.

Get started, follow these easy steps to join the walk: 1. Visit www.kidney.ca/ontariowalk 2. Select the community where you want to participate 3. Register for the event using the menu options on the left menu.

4. Email friends and family and inspire them to join you or contribute to your fundraising effort.

5. Have fun! You’ve joined the movement and have made a step to raise awareness about kidney health and organ donation.

Can’t walk, but want to show your support? Follow steps 1 and 2 to make a donation to the community closest to you.

You can also search for a team or individual participant and support their fundraising campaign.

bby Vara appears to be your typical college student; outgoing, carefree and armed with an infectious smile. But beneath the bubbly exterior lies someone older than her years. Just three years ago at the young age of 20, she made the life-altering decision to donate one of her kidneys to her ailing father.

“Honestly it was the easiest thing,” says Abby, when asked if the decision to donate a kidney at such a young age was a hard one. “There was no question at all.”

For many years, Abby Vara watched her father, Erampamoorthy Varaprasatham’s health deteriorate. After a multitude of tests and years of medical problems, including epilepsy, vision loss and diabetes, Erampamoorthy was diagnosed with a very rare neurological disorder. Eventually, the medication prescribed for his epilepsy resulted in renal failure.

“When my Dad had renal failure we all started getting tested,” says Abby. “I was secretly hoping it was me.” The testing process was a long one, but the final results were what she had hoped for. She was a perfect match. However, the surgery was often delayed because of her father’s fluctuating health.

“It was grueling,” says Abby of the testing process. “Not because it was painful, but because it was frustrating. I couldn’t donate to my father until his health improved, but in order for his health to improve he needed my kidney.”

After three years of countless tests, assessments and waiting, Abby and her family “Honestly it was the got the call they had been waiting for. Her father’s health had finally stabilized and he easiest thing... there was was well enough to withstand the surgery no question at all. ” and recover. The surgery was scheduled for June 18, 2009.

Abby’s surgery, which lasted six hours, was a success. Her kidney was transplanted and within an hour of surgery, the kidney was working perfectly in her father. However, soon after the transplant, her father started to experience complications and was moved to the intensive care unit.

“No one told me,” says Abby, who would later discover that her father was having trouble coming out of anesthesia and was close to death after the surgery.

Four days after surgery Erampamoorthy woke up just in time for Father’s Day. Abby was wheeled into her father’s ICU room and was greeted by a smile.

“He is a man of few words, and the first thing my Dad told me was thank you,” recalls Abby. “It was a great moment.”

Recently, Abby and her family celebrated the one-year anniversary of the successful kidney transplant. Erampamoorthy now leads an active lifestyle which includes playing badminton and being involved with various fundraising initiatives.

This year Abby has the honour of being the ambassador for the Give the Gift of Life Walk in Ottawa. By sharing her story she hopes to raise awareness about the importance of living organ donation.

For more information about the Give the Gift of Life Walk in your community visit www.kidney.ca/ontariowalk today!  Summer 2010 / Kidney Living /

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PERSONAL STORY

A Need to Give Back For most people, turning 50 is a milestone.

Kathleen and her hairstylist, Susan Spence

by Kathleen Murphy

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/ Kidney Living / Summer 2010

I

n the year or two leading up to it, I had thought about what I could do to celebrate this birthday that was different from what others had done. About a year before, my hairdresser and I were talking about any number of things, one of which was that she had recently been tested to see if she could donate a kidney to her husband who was on dialysis. I asked her what was involved and if anyone could donate a kidney.

She could not see why not.

I thought about it for several weeks and then spoke to my husband about the idea.

To be honest, he was not thrilled, wondering just why I would want to do such a thing.

I explained my rationale. I have had a wonderful life and I felt a need to give back. If donating a kidney would not cause me any long term harm, then it seemed to me a great thing to do. I could make it my 50th birthday gift. I promised that if the assessment identified any risks other than minor risks, I would do nothing to jeopardize my wellbeing or our life together.

I then discussed the idea with my family doctor during my annual physical. She too was quite puzzled with my ambition and, although not objecting, this was new to her experience and she could not provide me with specific next steps. I did some more research on my own and then my husband and I met with the nurse coordinator for the transplant program in London to discuss a non-directed kidney donation.

Her first reaction was, by now, familiar to me: she asked me to explain my reasons and wondered if there could be another way for me to give back, short of this type of donation. I was bent on exploring this further so I asked her to describe the procedure as if I were related to the potential recipient. She outlined the series of rigorous tests and the psychosocial assessments. She also noted that they are not able to complete non-directed kidney donation surgeries in London because the hospital is too small to provide the separate facilities required to ensure the confidentiality for both donor and recipient. She suggested that I might contact St. Michael’s Hospital or Toronto General Hospital. I went to St. Michael’s and that formally started the process.

It took about a full year from the time I first met the nurse coordinator until I was able to make the actual donation. They were able to coordinate matters such that many of the preliminary tests were completed in London, so only the more extensive and comprehensive tests required visits to Toronto.

Great concern to detail was exercised in the entire assessment process. I sometimes thought they were trying to talk me out of donating, but came to understand through all of the testing and assessments that they were simply being very thorough in ensuring that my best interests were looked after, both physically and emotionally.

Early in the process, they told me that donating a kidney to a stranger needed to remain top secret. If not, I would be approached by all manner of friends with requests to donate to their particular loved one. So, for approximately 12 months of the assessment journey, I kept it to myself and my husband and the clinical team.

BUILDING A FOUNDATION One of my contacts was with The Kidney Foundation of Canada Peer Support Program. There was a person who had donated a kidney anonymously just the previous year, who was willing to coach and mentor me through the process. He was so helpful: he gave me the information on his timelines and schedules, answered my questions on the invasiveness of the various tests and shared with me his experience with letting his family and friends know about his decision to donate. We spoke about a half dozen times on the phone and then, about a month before my donation, face to face. He continues to be a support and this year, almost to the day of my anniversary of the donation, called just to see how I was doing.

After 10 months of assessments, I was given the green light. I was able to pick a time to donate that I could accommodate in my job and my husband’s work schedule. In addition to my peer support volunteer, I received additional coaching on how to let friends and family know.

At the appropriate time, I had scheduled “elective surgery” with my supervisor at work so she could arrange coverage for my clients. About two weeks before the operation, I emailed those close to me along with a strong request that they not broadcast the news. No one expressed concern about my decision and so many people offered their support.

I was off work for approximately six weeks. I have relatively low pain tolerance but, for me, there was little pain and relatively moderate discomfort after the first 24 hours. I did have a longer than expected recovery from fatigue which I believe was the result of the general anaesthetic. I was able to qualify for sick leave from work.

All my travel costs to go to Toronto for tests and for the surgery, were reimbursed through the Trillium Gift of Life Network’s Program for Reimbursement of Expenses of Living Donors (PRELOD).

Immediately following the surgery and after making sure I was okay, my husband asked the surgeon how the recipient was doing. The doctor would only say that he completed his extraction procedure and delivered a good healthy kidney to the implant team. To this day, I do not know who received my kidney. I live the dream that their life is better because of something that was relatively small for me to do.

Recently I have agreed to become a peer support volunteer to mentor others who may be considering non-directed donation. I also hope in the future to assist all communities that can do living donor transplants to open the doors to persons wanting to do a non-directed donation. 

Janet Bick Retires Recognizing a lifetime of service and passion

J

anet Bick, Ontario Director of Policy and Programs, retired from The Kidney Foundation of Canada at the end of June after 17 years as an employee. Prior to that, Janet spent another seven years as a volunteer leader for The Kidney Foundation.

Add to that her personal experience as a kidney transplant recipient for over 35 years – and her years of personal wisdom gleaned from dialysis and kidney disease management and you truly have a unique champion for The Kidney Foundation.

Janet’s family, in particular her mother, were instrumental in getting the Foundation started in Montreal in 1964. The advocacy gene is well ingrained in Janet.

Janet’s role has ranged from tackling the more demanding rigours of Ontario Government Relations, to working on National Public Policy Issues, and in recent years, to leadership of the Ontario program team.

She has made countless presentations to government officials, committees, standing committees, executives and public forums. Topics have included transportation access, renal services, access to drugs and treatments, and the impact of government cuts on kidney patients.

Her list of accomplishments is lengthy and extremely impressive. Among her accomplishments, Janet provided leadership to the Ontario Organ Donation Committee and those volunteers who advocated for the establishment of a single provincial organ donation management body. The result was the formation of the Trillium Gift of Life Network and its related government legislation in 1992.

Janet has advocated to government for sweeping change to the way in which renal care is managed in this province. Just last spring, the formation of the Ontario Renal Network was announced. Since then, Janet has spent many hours at the planning table with Renal Network leaders, keeping the Foundation at the forefront of future developments.

On June 22, 2010 Janet was honoured with the first Ontario Renal Network Lifetime Achievement Award. “Janet works tirelessly on behalf of patients living with kidney disease. The Ontario Renal Network exists today in large part due to the energy and commitment that Janet and others in the kidney disease community brought to the campaign to create a provincial approach to organizing kidney care,” said Dr. Judith Miller, Provincial Clinical Director, Ontario Renal Network.

For the Ontario Branch, Janet recently reorganized patient assistance guidelines in order to ensure that everyone in the province was receiving equal service and support.

Janet works on projects and departmental objectives with an unmatched finesse and grace. Her dedication to the needs of renal patients and her strong organizational memory will be missed.

Our best wishes on your retirement, Janet.  Summer 2010 / Kidney Living /

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BUILDING A FOUNDATION

Oh What a Night!

Galabration 2010 Support Achieves New Heights Celebrate, Motivate, Educate

G

p Honorary Chair Mr. John Bitove is introduced

by Mrs. Barbara Keenan u Emcee, Jeannie Lee

p Central Ontario Chapter President Christine Jowett with past Honorary Chairs Senator Vivienne Poy, Barbara Keenan, Donald Clayton, Brian Flood, Margaret Hall, Riva Grinshpan and Dr. Dimitrios Oreopoulos

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alabration: a new vision for a classic event. Donors, philanthropists, corporate supporters and volunteers joined together at the Metro Toronto Convention Centre on April 7, 2010 to celebrate, motivate and educate, and of course to raise funds for The Kidney Foundation.

Attendees were inspired by the personal story of Mr. John L.N. Bitove, 2010 Galabration Honorary Chair and Dr. Susan Quaggin, a Toronto-based researcher and the 2009 Medal of Research Excellence honoree, who educated the audience, sharing the new directions and advancements in kidney research.

Emcee Jeannie Lee, from CBC’s The Money Show, shared her personal connection to kidney disease. Her candour and emotion in sharing her family’s story was remarkable. Having an emcee with such a personal connection to and understanding of the plight of renal patients and their families and caregivers was inspiring to the attendees.

Marie-Eve Chainey’s inspiring story brought the crowd to their feet. As a teenager, Marie-Eve learned her kidneys were failing while traveling abroad in Spain.

Now a nocturnal hemodialysis patient, Marie-Eve is best known for her drive in fulfilling her dreams which includes competing in the sport of high jump at a national level while on dialysis and studying to become a nurse while continuing to work part-time as a trainer at a local gym in Ottawa. Marie-Eve continues to challenge new boundaries to new heights. (See more of Marie-Eve’s story on page 11.)

Thank you for your support of Galabration 2010. We are thrilled to report that through your support more than $250,000 was raised. We look forward to another successful event in 2011 and the advancement opportunities it provides.

Mark your calendars for “Galabration 2011” on Wednesday, April.27, 2011. 

COMMUNITY HIGHLIGHTS

Community Highlights Ontario Volunteer Service Award t Six Kidney Foundation volunteers from the Sarnia-Lambton area were honoured in April with Ontario Volunteer Service Awards. This award honours the thousands of people who generously contribute their time as volunteers across Ontario.

L to R: Gerry Cossette, 10 years; Janet Glenn, 25 years; Doug Doull, 15 years; Joyce Bolton, 10 years; Judy Williamson,15 years; Murray Sutherland , 10 years. Photo credit: Hugh Sutherland

Rabbi Bulka awarded Key to the City

p On April 10, Ottawans had a chance to enjoy some great country music while doing their part to “boot stomp” kidney disease at “Band Against Kidney Disease.” Organizer Jennie-Lee Kritsch, a kidney transplant recipient, and her team of volunteers “rounded up” “Canada’s Rockin’ Country Band” Ambush to entertain and keep the crowd dancing. The event was very successful, raising just over $4,000 for The Kidney Foundation of Canada.

p Surrounded by friends, family and colleagues, Rabbi Bulka was awarded the key to the City of Ottawa. His Worship Larry O’Brien, Mayor of the City of Ottawa, presented the city’s highest honour during Kindness Week, which takes place in Ottawa during the month of February.

Currently Rabbi Bulka is chair of Trillium Gift of Life Network. He also served as chair of the KFOC Organ and Tissue Donation Awareness Committee and continues to be an integral part of the Eastern Ontario Chapter.

L to R: Jennie-Lee Kritsch, Marlene Murray and Carolyn Pennett

Photo Credit: Roger Lalonde, City of Ottawa

Band Against Kidney Disease

Summer 2010 / Kidney Living /

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COMMUNITY HIGHLIGHTS

Inspirations 2010

Celebrating Volunteerism

p “I just wanted to reiterate my thanks for the tribute last night. The whole evening was awesome. I know it involved a lot of work on the part of many people and I am truly grateful. I am very humbled to be honoured. Most importantly, I’m delighted that so much money was raised on behalf of the Foundation.” – Doug Parsons, Inspirations 2010 Honoree

p The Eastern Ontario Chapter held its Volunteer Appreciation Night on May 12. Among the volunteers being honoured was Eastern Ontario Chapter Board President Judy Taylor. Dr. John Dossetor was in attendance to present Judy with the Eastern Ontario Chapter’s Alfred E. Coll Award for her distinguished leadership and service.

We came together to celebrate those people who are Inspirations—People Making a Difference. On behalf of The Kidney Foundation of Canada, we wish to thank you for joining us in honouring Dr. Cal Stiller, Dr. Robert Lindsay, Douglas Parsons and Bill Brady. By attending Inspirations 2010, you made this an evening of tribute, fundraising, and awareness.

Your efforts helped contribute to raising $70,000! As The Kidney Foundation of Canada is a non-profit organization and our fundraising is dependent upon donations from the community, we are sincerely grateful for your active role.

We extend a big thank you to LEO Pharma, Amgen, Astellas, Baxter, OrthoBiotech, London Business Forms and the Lamplighter Inn and Conference Centre and Straight Street Event Services for their important support.

It is rare to celebrate excellence among friends. Please join us in celebrating another group of Inspirations in 2012.

L to R: Kim Pritchard, Fund Development Manager, Southwestern Ontario Chapter; Dr. Robert Lindsay, honoree; Dr. Louise Moist, Event Chair; Dr. William Clark, President Southwestern Ontario Chapter; Dr. Cal Stiller, honoree; Heather Hiscox, Emcee and Host of CBC News Now; Dr. Peter Blake, Chair Nephrology; Sharon White – Director Regional Renal Program; Doug Parsons, honoree. Absent, Bill Brady, honoree.

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Italian Night 2010 p The 26th Annual Italian Night Dinner was an overwhelming success. The dinner, held on Saturday, March 13, was once again sold out. Those who attended were treated to an outstanding five-course meal while being entertained by the Espresso Band. The evening marked a very special occasion as the new co-chairs and committee members were introduced and members of the original organizing committee were recognized for their outstanding contributions. Those who are new to the committee certainly demonstrated their dedication and eagerness to ensure that the success of the Italian Night Dinner lives on, as almost $50,000 was raised at this year’s Dinner for the Agostino Monteduro Fund.

L-R: Agostino Monteduro, Susan Storey, KFOC Senior Director, Development, Mario Frangione, Italian Night Co-Chair

COMMUNITY HIGHLIGHTS

Living with Kidney Disease Patient and Family Symposium u The Windsor and District Chapter and Hôtel-Dieu Grace Hospital Regional Renal Program held their first Annual Patient and Family Symposium on April 24. It was a great day filled with presentations, education sessions, and opportunities to meet others and share information. Dr. Kadri and Dr. Rehman opened the conference with an inspiring message: Taking Diabetes, High Blood Pressure and High Cholesterol to Heart.

Movers and shakers in the Tai Chi and Zumba workshop

Ontario Branch hosts The Kidney Foundation’s National AGM t Celebrate the journey. Mark the moment. Venture forward.

On the weekend of June 10-13, delegates from across Canada joined together on the beautiful Toronto waterfront for the Foundation’s Leadership Conference and National Annual General Meeting.

Congratulations to the following national award recipients who are from Ontario: The Chinese Renal Association, Central Ontario Chapter; winners of the MaryLou Karley Patient Services Award; Dr. Kevin Burns, winner of the 2010 Medal of Research Excellence; The Letters Patent General Bylaw Task Force and the Financial Policies Task Force received the President’s Award. Ontario volunteers, Peter Davis and Harvey Thomson and Ontario Branch Executive Director Jim O’Brien were among the recipients of this award.

Members of the Chinese Renal Association - Central Ontario Chapter, with National Kidney Foundation President, Kathryn Richardson at the National AGM.

Healthy Living Award

L-R: Leon Lau, The Kidney Foundation of Canada, Annie Chung-Hui (dietitian, South Riverdale Community Health Centre), Helen Poon (Community Mission Specialist, Heart and Stroke Foundation of Ontario) and Charles Wong (Program Coordinator, Yee Hong Centre for Geriatric Care).

t In the past several years, The Kidney Foundation has collaborated with other organizations within the Chinese community in the prevention and management of chronic diseases such as heart disease and diabetes, the leading causes of kidney failure. The “Healthy Eating for Life” Initiative is a collaboration of six organizations—Heart and Stroke Foundation of Ontario, Canadian Diabetes Association, Carefirst Seniors and Community Services Association, The Kidney Foundation of Canada, South Riverdale Community Health Centre, and Yee Hong Centre for Geriatric Care, in partnership with Sing Tao Daily that provided culturally relevant healthy recipes for the Chinese community to promote healthy eating for chronic disease prevention and management.

This Initiative has been awarded for 2010 Model of Care Award for Health Promotion by the Association of Ontario Health Centres at its Conference on June 10. In addition, it has also been selected by Dietitian of Canada and American Dietitian Association for poster presentation at their conferences.

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EAT TO LIVE

Fresh Berry Profiteroles Ingredients ½ cup water 4 tbsp. unsalted butter Pinch of sugar ½ cup all-purpose flour 3 small or 2 large eggs Glaze 1 beaten egg with 1 tsp. water Filling 4 ½ cups berries such as blueberries, raspberries and strawberries 2 ½ cups Cool Whip™ Garnish 1 tbsp. icing sugar 18 fresh mint leaves Preparation 1. Preheat oven to 425ºF 2. Put water, butter and sugar in a small saucepan and bring to a boil.

3. Add flour all at once and stir vigorously until a smooth ball forms. Some dough will stick to the bottom of the pan forming a thin film. This indicates the flour is cooked.

Remove from heat immediately.

4. Transfer to a mixing bowl and add eggs, one at a time, beating well between each addition. If using a standing mixer, use the paddled attachment.

5. Line baking sheet with parchment paper and drop spoonfuls of dough mixture 1” by ¾” high), spacing 2 inches apart. Brush each drop with glaze to smooth tops.

6. Bake for 10 minutes.

7. Reduce heat to 350ºF without opening oven door, and continue baking for 30 minutes.

Puffs should sound hollow and dry when tapped on bottom. Cool on wire rack.

8. Cut each puff open and fill with ¼ cup berries, letting some spill over; top with 1 tbsp.

Cool Whip™ and dust with icing sugar. Garnish with mint for special occasions.

Note: If not using all puffs, freeze baked puffs after they have cooled off in an airtight container. To use: Warm in 350º pre-heated conventional oven for 5 minutes. Do not microwave. Makes 18 puffs.

Nutritional analysis: Per serving: 1/9 of recipe 2 profiterols filled with ¼ cup berries and 1 tablespoon Cool Whip™ each.

Renal exchange: 1 starch + 1 fruit; Calories 205 Kcal; Protein 3 g; Carb 20 gram.; Fibre 4 g; Total Fat 13 gram; Saturated fat 9 gram; Cholesterol 95 mg; Sodium 27 mg; Potassium 131mg; Phosphorus 52 mg

This recipe is from the Spice it Up Cookbook. These recipes can be enjoyed by dialysis patients and their friends and families.

Tips for Safe Food Handling

Avoid food-borne illness and keep your family safe. Food safety experts recommend that everyone think about food safety at each step in the food handling process—from shopping to storing leftovers. What this really means is always following these four simple steps: CLEAN - Wash hands, utensils and surfaces in hot soapy water before and after food preparation, and especially after preparing meat, poultry, eggs or seafood to protect adequately against bacteria. Using a disinfectant cleaner or a mixture of bleach and water on surfaces and antibacterial soap on hands can provide some added protection.

SEPARATE - Keep raw meat, poultry, eggs and seafood and their juices away from readyto-eat foods; never place cooked food on a plate that previously held raw meat, poultry, eggs or seafood.

Photo credit: BigStockPhoto.com/4319037

COOK - Cook food to the proper internal temperature (this varies for different cuts and types of meat and poultry) and check for doneness with a food thermometer. Cook eggs until both the yolk and white are firm.

CHILL - Refrigerate or freeze perishables, prepared food and leftovers within two hours and make sure the refrigerator is set at no higher than 40°F and that the freezer unit is set at 0°F.

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/ Kidney Living / Summer 2010

BUILDING A FOUNDATION

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

August

5-7 34th Annual Sarnia Pro Am, Sarnia 7 Walk Awareness & Fundraising BBQ, Tecumseh 10 Fore Ladies Only Golf Tournament, London 12 Hub International Golf Classic, Windsor 15 Caring for Kidneys Golf Tournament, Sudbury 18 Kidney Connect Support Group Meeting, Kitchener 18 Lakeridge Health Patient & Peer Support Coffee Club 19 Fore Women Only Golf Tournament, Kingston 21 Ride 4 Kidney, Mississauga 21 Ride 4 Kidney, Timmins 23 Super Ex Living Green Ribbon, Ottawa 29 Annual Greenfield Charity Tournament, Aurora

September

Give the Gift of Life Walk for organ donation awareness events will be held throughout September in communities in Ontario. You, your

12 15 21 24 26 30

family and friends can join us for a wonderful fall walk while raising funds and awareness about kidney disease.

Online fundraising makes it easy. See the back cover of this magazine for a list of confirmed communities. New communities are still being confirmed, call your local Kidney Foundation office or visit www.kidney.ca/ ontariowalk for updates.

BLRSP Annual Charity Tournament, Brampton Lakeridge Health Patient & Peer Support Coffee Club Kidney Connect Support Group Meeting, Kitchener Showdown in the Downtown, London Sarnia-Lambton Chapter 25th Anniversary Celebration Kidney Transplant Information Session, Windsor

20 Kidney Connect Support Group Meeting, Kitchener 24 Celebration of Life, Ottawa

November

6 David Taylor Pub Night, Ottawa 16 Kidney Connect Support Group Meeting, Kitchener 17 Lakeridge Health Patient & Peer Support Coffee Club 18 Bowling, Toronto 20 4th Annual Black and White Night, Sarnia 24 Inspirations, Ottawa

December 1

Impressions, Hamilton

October 16 19 20 20

”Autothon” Car Rally, Sarnia Pasta Dinner, Thorold Celebrity Men’s Fashion Show, London Lakeridge Health Patient & Peer Support Coffee Club

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.

Summer 2010 / Kidney Living /

27

ln communities across the province this fall.

The Kidney Foundation of Canada Give the Gift of Life

walk Join us in a community near you for our annual Give the Gift of Life Walks this September.

For more information about starting a walk in your community, contact Lindsay Burnham at kidneywalk@kidney.ca or 1-800-387-4474 Ext. 4968.

Belleville Blind River Brantford Cornwall Guelph Hamilton Iroquois Falls Kingston Kitchener London Mississauga North Bay Orangeville Orillia Oshawa Ottawa Pembroke

Picton Renfrew St. Catharines Sarnia Sault Ste. Marie South Porcupine Strathroy Sudbury Thunder Bay Toronto Windsor-Essex County York Region

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