IMPACT REPORT 2013

HOPE - SUPPORT - EMPOWERMENT - ENGAGEMENT

FIR ST-TIME DONOR S68,000

One Million

VEHICLES DONATED TO THE KIDNEY CAR PROGRAM

LAUNCH of new online support program

KidneyConnect.ca

We provided nearly $1 million in financial support to members of the kidney and organ donation communities.

Your Gifts Impact Millions of Lives

$61,000,000RAISED TO DATE

3.5 million Canadians have Kidney Disease

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TO THE CANADIAN NATIONAL TRANSPLANT RESEARCH PROGRAM

80% OF EVERY NET DOLLAR GOES TO PUBLIC BENEFIT*

We committed with other funding partners, including Canadian Institutes of Health Research

Public Policy 2% Research 31.6%

Public Education 19.1%

Management & Administration 19%

Patient Services 18%

Organ Donation 5.5%

Community Building 4.7%

150,000media inserts distributed to raise awareness of kidney disease nation wide

$23 Million

WORLD-CLASS TRAINING PROGRAM 40 NEW RESEARCH GRADUATES SINCE 2005

invested in research by The Kidney Foundation + over $3,000,000 more by partners

*net of fundraising costs

RESEARCH PROJECTSSUPPORTED

Three decades ago, it was estimated that one

million Canadians had kidney disease.

Today, the number has more than tripled.

Reducing the burden of kidney disease has never

been more critical. Thanks to the increased

support from donors, volunteers, and the online

community, we are increasing our impact.

Donor support generated hope in 2013 by making

it possible for us to fund the first Canadian patient-

oriented research regarding dialysis patient and

carer priorities; and to invest in the Canadian

National Transplant Research Program designed to

transform the field of transplantation and improve

the quality of life of transplant patients.

We enhanced support and empowerment

by launching an online peer support service,

KidneyConnect.ca, and distributing 300,000 public

education materials, including a World Kidney Day

media insert in both The Globe and Mail and La

Presse in collaboration with the Canadian Society

of Nephrology.

We continued to empower people to manage their

kidney health through our targeted chronic kidney

disease screening program. To the end of 2013,

nearly 7,000 people have benefited.

A new and influential voice in support of organ

donation and the Foundation’s Kidney Car program came onboard on World Kidney Day when Don Cherry donated a vehicle and spoke about his family’s experience with kidney failure.

Facebook fans were heavily engaged in rising to the challenge of a “1 like = 1 dollar” campaign, raising funds for the Foundation’s ongoing New Challenge Campaign, which now totals just over $61 million.

Together, we’ve made a significant contribution to enhancing kidney health and reducing the burden of kidney disease.

Thank you for your trust and support.

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OUR PUBLIC BENEFIT

Enhancing kidney health

Reducing and eliminating the burden of kidney disease

OUR COMMUNITY

All people at risk of, or affected by, kidney disease

Paul Shay, National Executive Director

Hope

Support

Empowerment

Engagement

I joined The Kidney Foundation as a volunteer

immediately upon my arrival in Calgary in 1994.

I was the first pediatric nephrologist recruited by the

Alberta Children’s Hospital and I was keen to begin

developing a complete pediatric program for the

Southern Alberta Renal Program which also serves

some children and their families in Saskatchewan

and British Columbia.

I discovered many ways to contribute to the kidney

community, from acting as a spokesperson in World

Kidney Day campaigns to participating in, and

fundraising through, walk events. I was inspired

when awarding national prizes such as the Medal for

Research Excellence and engaged when developing

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“Most people reading this have been touched by kidney disease in one way or another. If you’re like me, you’re endlessly frustrated by its nature. Debilitating. Incurable. Utterly relentless.

“Seeing people I know and love go through the daily reality of this disease is disheartening; but I have hope.”

public education materials to benefit patients, their families and carers.

Twenty years forward, I see the tremendous progress we have made in raising kidney health and disease awareness, advancing research, public policy and disease early detection and management, while improving treatments and therapeutic options such as organ donation.

The path forward holds promise. It’s that promise – and the dedicated community of donors, volunteers, researchers, health professionals, Kidney Foundation staff and millions of people affected by disease – that motivate me both professionally and as a volunteer.

To all of you who walk alongside us to power the possible, thank you for your contributions!

Dr. Julian Midgley, National President

Dr. Julian Midgley

HOPE - Engaging Patients and Carers in Research Priority Setting

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A Canadian FirstSpearheaded by Canada Research Chair in

Health Policy and Citizen Engagement,

Dr. Andreas Laupacis, Canadian researchers

sent out a survey and brought together dialysis

patients, carers and clinicians to identify the

“Top 10 Unanswered Questions” they felt new

research should investigate.

Results were received in 2013 and are shared online

at: http://www.cann-net.ca/patient-information/

dialysis-research-priorities-survey#results.

“Because people on dialysis and those who care for them ‘live the disease’, they have an important role in helping us understand what they identify as research priorities.”

Dr. Andreas Laupacis

Study participants, Chantel and Claire Large, provided their insights. Chantel was primary carer to her mother when Claire went on dialysis and later, received a transplant (2012).

Medal for Research Excellence - 2013 Recipient, Dr. Marcello TonelliThe medal is presented annually to a Canadian resident who is recognized for excellence in kidney-related research.

IMPACT:People with chronic kidney disease are at increased risk for cardiovascular events and are more likely to die of heart failure than to develop kidney failure. Dr. Tonelli’s groundbreaking research in the area of cholesterol reduction led the way in improving treatment for these patients.

IMPACT: - inform future research to improve

patient care- empower patients and carers

HOPE - Research Networks have the Potential to Transform Patient Care

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Pooling resources with like-minded partners powers transformative change. It’s why we help fund nation-wide research networks and programs. In doing so, The Kidney Foundation leverages donor dollars to invest in innovation that could result in the best possible public benefit. It’s research we couldn’t do alone; but it’s research we can help make happen.

The Canadian National Research Transplant Program (CNRTP) is one of these opportunities. The program brings together a vast network of 100+ investigators across 9 provinces, as well as patients and their families.

Led by Dr. Lori West (Edmonton) and Dr. Marie-Josée Hébert (Montreal), its goal is to

transform the field of transplantation.

Dr. Lori WestDr. Marie-Josée Hébert

IMPACT:- address the barriers to donation and

increase the number of available organs- improve the quality and viability of

donated organs and grafts- enhance long-term survival and quality

of life of transplant patients

In 1999, we conducted a survey with 18,000 patients. Findings showed a large group of patients lived over 50 km from their treatment team and many lived below the poverty line. Today, the multi-faceted burden of kidney disease continues to take its toll. Thousands of people turn to us every year for financial support to help make ends meet when the cost of health supplements or medication, or travel to dialysis treatment, prove too great.

Besides meeting the most pressing of needs, The Kidney Foundation provides a range of other

SUPPORT - Nearly $1 Million in Short-term Emergency Financial Support

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significant financial support, including:

• Living Organ Donor Expense Reimbursement.

This program reimburses living kidney and liver

organ donors for their gift of life, such as travel,

accommodation, and loss of income.

• Kidney Camps. From Atlantic Canada’s Kidney

Camp for Kids at Nova Scotia’s Brigadoon Village,

to Ontario’s Camp Dorset, and B.C.’s Kidney Camp

for Kids at Zajac Ranch, The Kidney Foundation and

its donors and partners support healthy living or

vacation respite for children and families in need.

• The B.C. Branch offers Kidney Suites. Developed through a partnership with the New Chelsea Society, four suites are available to renal patients from outside the Lower Mainland who are recuperating from a kidney transplant. The Branch also offers a three-bedroom townhouse for use by families who have to relocate to Vancouver in order that their child may receive hemodialysis at BC Children’s Hospital.

IMPACT:“The help I’ve received through The Kidney Foundation literally saved my life. They help people like me who fall through the cracks. I thank them from the bottom of my heart.”

Mathew Hogue

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We know that prevention and early detection are key to stemming the growth of chronic kidney disease. That’s why we have stepped up our efforts to increase awareness of risk factors for kidney disease.

In 2011, CN committed $600,000 to The Kidney Foundation of Canada for the launch of a three-year Chronic Kidney Disease (CKD) or SeeKD targeted screening initiative. The project, which is national in scope, aims to identify people who may have Chronic Kidney Disease (CKD). The funds generated by the sale of the scrapped metal of CN cars was

EMPOWERMENT - Targeted Screening Program Helps Manage Risks

used to fund this project, which promotes self-management behaviours and empowers members of the community, helping them to prevent or delay progression of CKD.

The program also generates an evidence base that is being used to inform public policy initiatives for prevention, early detection and management of disease.

CN has generously renewed its support of an additional $600,000 for another 3 years (2014-2016) to continue and enhance screening clinics with a focus on Aboriginal communities.

Diabetes is the leading cause of kidney failure in new patients.

1 in 10 Canadians has kidney disease and

millions more are at risk and don’t even know it.

IMPACT: - Hundreds of screening clinics have

been hosted throughout the country.- Nearly 7,000 people have received

information on whether they are at risk and if so, what they can do to manage it.

The number of Canadians being treated for kidney

failure has more than doubled in the past two

decades. And nearly 75% of the over 4,500

Canadians on the waiting list for an organ

transplant are in need of a kidney. So, engaging

the community in organ donation awareness and

commitment is vital.

In 2013, we gained support from an influential

spokesperson. Hockey broadcaster Don Cherry chose

to lend his celebrity status to the Kidney Car Program

in order to raise awareness of organ donation.

ENGAGEMENT

Don Cherry

“Donate your unwanted vehicle to Kidney Car like I did. It’s convenient, helps the environment, and best of all, supports The Kidney Foundation. Now that’s a hat-trick we can all celebrate.”

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His online testimonial had a tremendous impact:

“Hi Folks, I’ll bet you are just like me when I

coached the Boston Bruins, what’s all this stuff

about organ donations, it’s nothing to do with me.

I felt the same way till it hit home personally with

me. My son Tim was healthy as all get out and

then his kidneys failed and he immediately had to

go on a dialysis machine. I’m like you, I thought

what the heck is a dialysis machine.

“Tim was in dire straits let me tell you till my

daughter Cindy came to the rescue and donated

one of her kidneys and saved Tim’s life and you know there are thousands like Tim waiting for an organ transplant to save their lives and we can help these people in many ways.

That’s where my Beauty Yukon SUV comes in. It’s a lovely Black Cherry inside and out. Leather inside and I love it. I bought it brand new for Cindy, then my son Tim drove it, then I drove it for a while and lastly my grandson Del drove it, but all good things must come to an end. It has 300,000 miles on it and it breaks my heart but it is time to go. I love that Beauty and I got to thinking what better

On World Kidney Day, in March 2013, Don Cherry, hockey legend and long-time host of CBC’s Coach’s Corner, donated his 1997 Yukon to The Kidney Foundation of Canada’s Kidney Car program. He used his gift to raise awareness of organ donation, a cause that is particularly dear to him.

Don Cherry Supports The Kidney Car Program

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way to go out in style then by helping The Kidney Foundation of Canada’s Kidney Car Program.”

“My Dad is one of those people who falls in love with his vehicles,” says Cindy Cherry. “When it was time to give this one up he could think of no better ending to a vehicle that has served him, his son, daughter and grandson, well. He saw this as a great solution and a win-win situation.

“The Kidney Car Program is a triple win - hat trick - if you’d like, good for us, good for The Kidney Foundation and the people it helps, and of course, good for the environment.”

Cindy Cherry donated a kidney to her brother, Tim, when the dialysis he was having to treat acute kidney injury from a streptococcal infection was no longer enough to keep him alive.

- The revenue from Kidney Car is invested in activities to help people living with kidney disease, such as peer support, innovative research and raising awareness of the importance of life-saving organ donation as a preferred treatment for kidney failure.

- Don Cherry’s gift received national coverage in The Globe and Mail’s “Giving Back” section in March 2013; and his online video garnered over 4,300 views.

IMPACT:

- The Kidney Car Program raises $2.5 million annually to fund Kidney Foundation Programs.

IMPACT:

The Kidney Car program tows vehicles for free, provides a tax receipt to the donor and facilitates responsible vehicle recycling, resale or auction.

Making it Easier for Community Members to Connect and Develop Meaningful NetworksIn 1982, The Kidney Foundation made available its first nation-wide program: the Living with Kidney Disease manual. Over 13,000 copies of this valuable resource were distributed in 2013. And today, the resources and support we provide cross many platforms.

SUPPORT - EMPOWERMENT - ENGAGEMENT

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The Kidney Connect Peer Support program, originally launched in 2006 as an in-person or over-the-phone service has expanded online. KidneyConnect.ca is our most recent effort to respond to the growing and changing needs of the kidney community.

Living with Kidney Disease manuals distributed

Erica was diagnosed with membranoproliferative glomerulonephritis in 2011. It’s a disease that affects the filters of the kidney, the glomeruli.

IMPACT: “We had it beat into remission for just over a year, but it has returned. I am now waiting for my glomerular filtration rate to drop lower so I can begin dialysis. I am very happy to have found KidneyConnect.ca, as I am also a single mom to a 9 year old who is rather terrified of all of this (I think we both are). The more resources we have available, the easier this will be!” - Erica

IMPACT: Whether through events, with printed documents, by telephone, online or through social media, people affected by kidney disease are supported, empowered and engaged as members of the kidney community.

Erica, with daughter Carolyn

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“My name is Ania and I was diagnosed with Alport

Syndrome (Autosomal Recessive) in 2009. I have

been on ACE inhibitors since 2007, however my

disease is progressing. My GFR is approximately 60

and I have very high proteinuria. For the last few

years I was on and off the medication because I was

pregnant a few times and finally had a successful

pregnancy. I have a 7 month old healthy baby

boy! The pregnancies took a toll on my health and

I lost quite a bit of kidney function when I was

expecting... but I have no regret! I am very happy

that I was able to deliver a healthy baby.

“I am a 48 year old wife and mother to 2 daughters. I was diagnosed with diabetes at age 8. I started on peritoneal dialysis in 2006 and continued for 9 months at which time, I received a kidney and pancreas transplant in Feb 2007. It has been an amazing blessing to have received. I no longer have diabetes and have been able to return to work and many other activities that I enjoy. I have had several episodes with possible rejection occurring, but was able to be treated with high dose medications that stopped the rejection”.

IMPACT:“I am grateful for all the support I have received from The Kidney Foundation and think this network is an awesome idea. I am involved with the peer support group through the Kidney Foundation and I have heard from many people that there is a huge need for support groups to help each other out!” - Bev

In addition to the kidney disease I am also wearing

hearing aids, hearing loss is very common for

Alport Syndrome patients. My brother who is also

affected had kidney failure at the age of 25 and

was on dialysis for 1.5 year before getting a kidney

transplant 6 months ago. He had a high blood

pressure for years, which accelerate the progression

of the disease. He also has a hearing loss.

IMPACT: Thank you for creating this space for people like

us to connect!!! It is encouraging!”

14]

SUPPORT - EMPOWERMENT - ENGAGEMENT

I Like = 1 Dollar$5,000 raised with support of Facebook Fans during the Aviva “I Like = $1” campaign

The Kidney Foundation’s social media presence

counts a total of 15,000 fans and followers. Our

online community is not only engaged in providing

support and empowering its membership, it is also

active in fundraising for The Kidney Foundation.

“My husband and I currently

living in Saskatoon. We have

been married for 15 years. After

my husband was diagnosed with

kidney disease in July of 2007,

our life changed forever. It took years for him to

accept it. But I have to say that he is doing very,

very good now.

“We moved from Toronto four years ago. Recently,

we found out that his kidneys are failing rapidly,

so we started planning. He saw his Transplant

Nephrologist, who made recommendations. Now

my husband is due to meet his Transplant surgeon

before the end of this year.

“We are hopeful. I am a good match. I am here to share and to learn from others. This is new to me. Thank you for having me here.” - Leta

“My daughter, almost sixteen, was diagnosed almost seven years ago with chronic kidney disease. After many examinations we were shocked to find she was born with only one kidney, and the kidney she did have was the size of that of a two year old, and functioned at 51% of its capacity. Today it is working at approximately 13%, and creatinine levels are in the mid 300’s and of course fluctuate in and around that range. My step father has been cleared and given the okay for him to donate to my daughter once her health improves”.

IMPACT: “This has and continues to be a very long battle for our family, and I’m so happy to find this site and have been waiting to find people like us who can understand our struggles, and who can hopefully offer some relief in sharing our stories. It is comforting to know we are not alone in this battle for better health.” - Tammy

2013 - 2014 NATIONAL BOARD OF DIRECTORSNational President Dr. Julian Midgley

Immediate Past President: Kathryn Richardson

Treasurer: Andrew MacRitchie

Secretary: Ken Mylrea

Vice President: Tetiana Gerych

Faye Clark, President, Atlantic Canada Branch

Christopher Gobeil, President, Quebec Branch

Dr. Manjula Gowrishankar, President, Northern Alberta and The Territories Branch

Paul Kidston, National Director-at-Large

Kurtis Krug, President, Saskatchewan Branch

Jason Kroft, National Director-at-Large

Guy Langlois, National Director-at-Large

Mike Sheppard, President, Southern Alberta Branch

David Stack, National Director-at-Large

Harvey Thomson, National Director-at-Large

Ron Walker, President, British Columbia Branch

Marsha Wood, National Director-at-Large

Terry Young, President, Ontario Branch

Dr. James Zacharias, President, Manitoba Branch

2009 - 12: Kathryn Richardson, ON2006 - 09: Niloufer Bhesania, ON 2004 - 06: Patrice Waché, QC2001 - 04: Peter Davis, ON1999 - 01: Mary Lou Karley, ON1997 - 99: Marcia Bell, BC1995 - 97: Owen B. Brown, NL1993 - 95: Vivian Doyle-Kelly, QC1991 - 93: Mary Catharine McDonnell, NS1989 - 91: Neil Bronsch, AB1988 - 89: Alfred Coll, ON1986 - 88: Doris Norman, NB

1985 - 86: Kenneth R. Hughes, MB1983 - 85: Howard McNutt, NS1981 - 83: Barry S. Arbus, ON1979 - 81: Stephen A. Stein, ON1977 - 79: Ben Vanden Brink, AB1976 - 77: David Ornstein, QC1974 - 76: Roger P. Kerans, AB1970 - 74: Harold Ashenmil, QC1964 - 70: Arthur Boidman, QC

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www.kidney.ca

The Kidney Foundation of Canada Past Presidents

Charitable Registration Number: 10756 7398 RR0001The Kidney Foundation of Canada’s audited financial statements are available online at www.kidney.ca, in the publication section.

NATIONAL OFFICE

300-5165 Sherbrooke Street West Montreal, QC H4A 1T6 514-369-4806 / 1-800-361-7494 Paul Shay, National Executive Director

BRITISH COLUMBIA BRANCH

4940 Canada Way, Suite 200 Burnaby, BC V5G 4K6 604-736-9775 / 1-800-567-8112 Karen Philp, Executive Director

NORTHERN ALBERTA AND THE TERRITORIES BRANCH

202-11227 Jasper Avenue Edmonton, AB T5K 0L5 780-451-6900/ 1-800-461-9063 Flavia Robles, Executive Director

SOUTHERN ALBERTA BRANCH

6007 1A Street SW Calgary, AB T2H 0G5 403-255-6108 / 1-800-268-1177 Joyce Van Deurzen, Executive Director

SASKATCHEWAN BRANCH

1-2217 Hanselman Court Saskatoon, SK S7L 6A8 306-664-8588 / 1-888-664-8588 Joyce Van Deurzen, Executive Director

MANITOBA BRANCH

Unit 1 - 452 Dovercourt Drive Winnipeg, MB R3Y 1G4 204-989-0800 / 1-800-729-7176 Valerie Dunphy, Executive Director

ONTARIO BRANCH

1599 Hurontario Street, Suite 201 Mississauga, ON L5G 4S1 905-278-3003 / 1-800-387-4474 Jim O’Brien, Executive Director

QUEBEC BRANCH

2300 René-Lévesque Blvd. West Montreal, QC H3H 2R5 514-938-4515 / 1-800-565-4515 Martin Munger, Executive Director

ATLANTIC CANADA BRANCH

56 Avonlea Court, Suite 204 Fredericton, NB E3C 1N8 506-453-0533 / 1-877-453-0533 Tracy Durkee-Jones, Executive Director