Kidney Foundation of Canada 2013 Impact Report

HOPE - SUPPORT - E MPOW ER ME N T - E NG AGE ME N T

IMPACT REPORT 2013

Your Gifts Impact Millions of Lives

68,000 FIRST-TIME DONORS

VEHICLES DONATED TO THE KIDNEY CAR PROGRAM

$61,000,000 RAISED TO DATE

3.5 million Canadians have Kidney Disease

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

LAUNCH

of new online support program

KidneyConnect.ca

WORLD-CLASS TRAINING PROGRAM 40 NEW RESEARCH GRADUATES SINCE 2005

80% OF EVERY NET DOLLAR GOES TO PUBLIC BENEFIT* Public Policy 2% Community Building 4.7%

Public Education 19.1%

Organ Donation 5.5% Patient Services 18%

Research 31.6%

*net of fundraising costs

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

$23 Million TO THE CANADIAN NATIONAL TRANSPLANT RESEARCH PROGRAM

Management & Administration 19%

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

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RESEARCH PROJECTS SUPPORTED

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

Hope Support Empowerment Engagement

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

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Paul Shay, National Executive Director Three decades ago, it was estimated that one

the quality of life of transplant patients.

million Canadians had kidney disease.

We enhanced support and empowerment

Today, the number has more than tripled.

by launching an online peer support service,

Reducing the burden of kidney disease has never

KidneyConnect.ca, and distributing 300,000 public

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 patientoriented research regarding dialysis patient and carer priorities; and to invest in the Canadian

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,

National Transplant Research Program designed to

nearly 7,000 people have benefited.

transform the field of transplantation and improve

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.

Dr. Julian Midgley

“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.

Dr. Julian Midgley, National President

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

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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.

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

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

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.

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.

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

“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

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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).

HOPE - Engaging Patients and Carers in Research Priority Setting

A Canadian First Spearheaded 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.

IMPACT:

IMPACT:

- inform future research to improve patient care

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.

- empower patients and carers

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

Dr. Marie-Josée Hébert

Dr. Lori West

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HOPE - Research Networks have the Potential to Transform Patient Care 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.

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

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

significant financial support, including:

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

its donors and partners support healthy living or

• 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 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.

1 in 10 Canadians has kidney disease and millions more are at risk and don’t even know it.

EMPOWERMENT - Targeted Screening Program Helps Manage Risks 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

used to fund this project, which promotes selfmanagement 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.

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.

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

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“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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Don Cherry

ENGAGEMENT The number of Canadians being treated for kidney

His online testimonial had a tremendous impact:

failure has more than doubled in the past two

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

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

coached the Boston Bruins, what’s all this stuff

Canadians on the waiting list for an organ

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

transplant are in need of a kidney. So, engaging

I felt the same way till it hit home personally with

the community in organ donation awareness and

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

commitment is vital.

then his kidneys failed and he immediately had to

In 2013, we gained support from an influential

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

spokesperson. Hockey broadcaster Don Cherry chose

what the heck is a dialysis machine.

to lend his celebrity status to the Kidney Car Program

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

in order to raise awareness of organ donation.

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

Don Cherry Supports The Kidney Car Program 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.

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

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.”

- 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 lifesaving organ donation as a preferred treatment for kidney failure.

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.

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

- 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.

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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

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Erica, with daughter Carolyn

SUPPORT - EMPOWERMENT - ENGAGEMENT Making it Easier for Community Members to Connect and Develop Meaningful Networks In 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.

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

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.

“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

“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.

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!”

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“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

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SUPPORT - EMPOWERMENT - ENGAGEMENT 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.

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

“My husband and I currently living in Saskatoon. We have been married for 15 years. After

Nephrologist, who made recommendations. Now my husband is due to meet his Transplant surgeon before the end of this year.

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

“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.”

very good now.

- Leta

my husband was diagnosed with kidney disease in July of 2007, our life changed forever. It took years for him to

“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

2013 - 2014 NATIONAL BOARD OF DIRECTORS

Faye Clark,

National President

President, Quebec Branch

National Director-at-Large

Dr. Julian Midgley

Dr. Manjula Gowrishankar,

Ron Walker,

Immediate Past President:

President, Northern Alberta and The Territories Branch

President, British Columbia Branch

Kathryn Richardson

Paul Kidston,

Marsha Wood,

Treasurer:

National Director-at-Large

National Director-at-Large

Kurtis Krug,

Terry Young,

Andrew MacRitchie

Secretary: Ken Mylrea

Vice President: Tetiana Gerych

David Stack,

President, Atlantic Canada Branch

National Director-at-Large

Christopher Gobeil,

Harvey Thomson,

President, Saskatchewan Branch

President, Ontario Branch

Jason Kroft,

Dr. James Zacharias,

National Director-at-Large

President, Manitoba Branch

Guy Langlois, National Director-at-Large

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Mike Sheppard, President, Southern Alberta Branch

The Kidney Foundation of Canada Past Presidents 2009 - 12: Kathryn Richardson, ON 2006 - 09: Niloufer Bhesania, ON 2004 - 06: Patrice WachĂŠ, QC 2001 - 04: Peter Davis, ON 1999 - 01: Mary Lou Karley, ON 1997 - 99: Marcia Bell, BC 1995 - 97: Owen B. Brown, NL 1993 - 95: Vivian Doyle-Kelly, QC 1991 - 93: Mary Catharine McDonnell, NS 1989 - 91: Neil Bronsch, AB 1988 - 89: Alfred Coll, ON 1986 - 88: Doris Norman, NB

1985 - 86: Kenneth R. Hughes, MB 1983 - 85: Howard McNutt, NS 1981 - 83: Barry S. Arbus, ON 1979 - 81: Stephen A. Stein, ON 1977 - 79: Ben Vanden Brink, AB 1976 - 77: David Ornstein, QC 1974 - 76: Roger P. Kerans, AB 1970 - 74: Harold Ashenmil, QC 1964 - 70: Arthur Boidman, QC

www.kidney.ca

Charitable Registration Number: 10756 7398 RR0001 The 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

MANITOBA BRANCH

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

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

NORTHERN ALBERTA AND THE TERRITORIES BRANCH

ONTARIO BRANCH

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

SOUTHERN ALBERTA BRANCH

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

QUEBEC BRANCH

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

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

SASKATCHEWAN BRANCH

ATLANTIC CANADA BRANCH

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

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